1. Quality of Life and Aging Conceptualization and Measurement of a Multi-dimensional Construct BY: JAMES M. DUNCAN UNIVERSITY OF ARKANSAS

2. Quality of Life (QoL)  broad term encompassing many facets of everyday life.  While QoL is considered an important tool in promoting positive outcomes in individuals, the conceptualization of the term is difficult.  As a construct used in research it includes psychological, social, physical, and environmental factors (Ferrans, Zerwic, Wilbur, & Larson, 2005; Poston et al., 2003; Schalock, 2000; Skevington, Lotfy, & O'Connell, 2004) defined by subjective and objective components (Courtney, Edwards, Stephan, O'Reilly, & Duggan, 2003; Cummins, 2000; Muldoon, Barger, Flory, & Manuck, 1998).

3. QoL in Specific Populations  Professionals and scholars alike acknowledge the importance of understanding QoL, as well as the need to define it, but there is little consensus in defining and measuring QoL.  In order to better understand QoL, it is beneficial to focus on specific population facets that are most important among similar groups.  One group of interest is older adult populations living in Long Term Care (LTC) environments such as Assisted Living Facilities (ALF) and Nursing Homes (NH).

4. QoL at the individual level  QoL differs among people due to the subjective nature of the construct.  This is meaningful because professionals want to know how a person interprets their QoL in order to create better health outcomes on an individual level (Slevin, Plant, Lynch, Drinkwater, & Gregory, 1988).  Identifying variables important to a person on an individual level is beneficial when creating interventions to promote QoL among LTC residents (Aller & Van Ess Coeling, 1995).  Understanding and reaching a consensus between individuals and professionals about what constitutes QoL is a must to ensure the use of appropriate measures to identify changes in QoL (Garratt, Schmidt, Mackintosh, & Fitzpatrick, 2002) as there is a large number of interventions available.

5. Variables affecting QoL  professionals have identified basic themes better known as domains that are considered relevant to QoL.  While there are several facets that underline common themes in QoL the World Health Organization identified four domains that are most widely used in measuring QoL.  Those domains are physical health, psychological health, social relationships, and the environment, (Group, 1993; Group, 1998).

6. Physical health  Physical health is often related to physical activity and exercise (Blair, Cheng, & Holder, 2001).  But it is also understood in relation to functional status such as the ability to perform basic activities on a daily basis (Leidy, 1994).  Physical health is also considered in terms of mobility and level of independence with performing Activities of Daily Living (ADL) (Blankevoort et al., 2010; Chen & Wilmoth, 2004).  Subsequently, physical health is also influenced by the presence or absence of disease or other chronic health conditions (Boult, Kane, Louis, Boult, & McCaffrey, 1994).

7. Psychological health  The WHO (2010) defines mental health as a state of well-being where a person can psychologically cope with normal every day stressors.  Emotional intelligence and regulation (Gross & Muñoz, 1995) as well as spiritual well-being (Koenig, 2010) are also considered important factors pertaining to mental health.  Psychological health is usually thought of in terms of either the absence or presence of mental illness (Keyes, 2005).  Mental illness is described as a diminished capacity to carry out normal routines and activities as a result of health conditions that alter a person’s thoughts, behaviors, or temperament (Satcher, 2000).

8. Social Relationships  Social relationships are networks of individuals who interact with each other to exchange emotional resources also known as social capital (Heaney & Israel, 2002; Portes, 2000).  Social relationships are also defined by the amount of social support a person receives from friends and family. There is no clear definition of social support (Finfgeld-Connett, 2005; House, Umberson, & Landis, 1988)  Social relationships can also be understood as providing a buffering effect when dealing with stressful events, which aid an individual in maintaining positive mental health outcomes (Cohen & Wills,1985; Thoits, 2011).

9. The Environment  The environment is a physical setting that a person interacts with such as the home, school, work, or recreational locations (Law, 1991 & Law et al., 1996).  Subsequently, the environment is defined by relationship an individual has with those surroundings on a physical, social, and personal level (Law, 1991 & Law et al., 1996).  The environment can also be described in terms of personal importance and an individual’s access to facets such as finances, health care, transportation, and physical safety (Skevington et al., 2004).

10. Measuring QoL  There have been several instruments created to measure QoL in general populations.  These are often focused towards younger adults, and while these instruments have been successful in their use with such populations it should be noted that older adults differ in many areas ranging from education to health status (Brazier, Walters, Nicholl, & Kohler, 1996).  Different types of instruments that measure QOL hold both strengths and weaknesses based on not only the questions being asked, but also the manner in which the instrument is administered.  Ultimately, it is up to the researcher or professional to determine an appropriate assessment tool based on specific facets they are interested in measuring.

11. QoL instruments for Older Adults in LTC  Over the past several years hundreds of QoL instruments have been created to target a variety of populations (Coons, Rao, Keininger, & Hays, 2000)  Of these instruments as little as 15 have been created or modified to address older adult populations (Haywood, Garatt, & Fitzpatrick, 2005).  Furthermore, of the 15 QOL instruments that has been identified as beneficial to older adults only seven stand out as specifically being used or tested in LTC settings.  Many researchers have assessed the effectiveness of these QOL instruments and have concluded that no one specific instrument can be considered better or worse than the other or the ‘go to’ tool for identifying QOL outcomes (Anderson, Aaronson, Bullinger, & McBee, 1996; Coons et al., 2000; Hawthorne, Richardson, & Day, 2001).

12. The Short Form 36 instrument (SF-36)  The SF-36 provides an overall rating of health as a general construct focusing on physical functioning and cognitive well-being (Gandek, Sinclair, Kosinski, & Ware, 2004; Ware & Sherbourne, 1992).  Andresen, Gravitt, Aydelotte, & Podgorski (1999) assessed the use of the SF- 36 in NH populations. Andresen et al. found moderate to strong correlations between resident ADL functioning and ratings with the psychical health domain on the SF-36 scale.  However, Anderesen et al. found low response rates or incorrectly completed surveys even among individuals with Mini-Mental State Examination (MMSE) scores above 17 who are capable of self-reporting.  Studies have noted that a majority of items on the SF-36 referred to situations not common in NH environments, such as shopping tasks or work settings (Andresen et al., 1999; Hayes, Morris, Wolfe, & Morgan, 1995).

13. The World Health Organization Quality of Life Brief instrument (WHOQOL-BREF)  The WHOQOL-BREF is a short version of the WHOQOL-100 questionnaire, and rates general health outcomes based on physical, psychological, social, and environmental factors (WHOQOL Group, 1998; Saxena, Carlson, Billington, & Orley, 2001).  A recent study in Turkey done by Bodur and Cingil (2009) assessed the use of the WHOQOL-BREF in older populations by comparing responses to the instrument among community dwelling older adults to that of older adults in LTC environments.  Bodur and Cingil found that a majority of responses to physical health and psychological health were similar between groups, however, the study did find that LTC residents reported lower scores within the environmental and social domains of the WHOQOL-BREF.

14. The Resident Self-Report QoL Instrument (RSRQOL)  The instrument focuses on meaningful activities, security, functional competence, privacy, autonomy, spiritual well-being, dignity, enjoyment, relationships, and comfort within LTC (Kane et al., 2003).  Degenholtz, Kane, Kane, Bershadsky, & Kling (2006) conducted a study on the RSRQOL to identify its usefulness as an external QoL indicator that could be used in an objective manner with the Minimum Data Set (MDS).  Deganholtz et al. found that the RSRQOL was limited in its effectiveness as an objective instrument when used in conjunction with the MDS.  However, research has indicated that using the RSRQOL through a direct interview process as a stand alone instrument yields beneficial results because responses come directly from residents as compared to the MDS which is often conducted through NH staff members (Kane et al., 2004).

15. The European Quality of Life instrument (EQ-5D)  The EQ-5D also previously known as the EUROQOL is a self-administered questionnaire that rates QOL based on five facets including mobility, normal activities, self-care, pain, and depression (Coast, Peters, Richards, & Gunnell, 1997).  Research has shown that cognitive functioning in older adults is related to the ability or inability to successfully complete the EQ-5D through self- administration (Coast et al., 1997).  Furthermore, studies conducted on older populations with various health issues have demonstrated validity and reliability of the EQ-5D in measuring health impairments related to QOL (Coast et al., 1997; Brazier et al., 1996; & Tidermark, Bergström, Svensson, Törnkvist, & Ponzer, 2003).

16. The Assessment of Quality of Life instrument (AQOL)  The AQOL is a scale that consists of facets related to illness, mental well- being, independent living, physical senses, and social relationships that are constructed to highlight small but significant changes in QOL related to elderly populations (Holland, Smith, Harvey, Swift, & Lenaghan, 2004).  One reason the AQOL may be more sensitive to changes is because it is longer as compared to other instruments.  However, it has been noted that more questions tend to increase the likelihood of lower response rate or incomplete or missing data (Holland et al., 2004).  In spite of the longer nature of this instrument research has shown that respondents feel that the AQOL is easy to understand aiding in better completion rates as compared to other instruments (Hawthorne, Richardson, & Osborne, 1999).

17. The Sickness Impact Profile for Nursing Homes (SIP-NH)  The SIP-NH is a variation of the Sickness Impact Profile (SIP). SIP was originally created to measure individuals perceived health status on a general level (Bergner, Bobbitt, Carter, & Gilson, 1981). The modified version of the SIP known as the SIP-NH was created to better address outcomes in non- community dwelling older adults (Gerety et al., 1994).  While the original version of SIP showed reliability and validity in NH populations (Rothman, Hedrick, & Inui, 1989) one of the main limitations to the instrument was its length creating respondent burden upward of 60 minutes (Dhanda, Mulrow, Gerety, Lee, & Cornell 1995; Gerety et al., 1994).  As a result the SIP-NH was developed particularly with administration in mind. The SIP-NH is half the length of SIP, and careful selection of questions specifically relating to issues such as functional status have resulted in an instrument that is still sensitive to health changes (Dhanda et al., 1995; Gerety et al., 1994).

18. QOL Measurements within the Minimum Data Set (MDS)  The MDS is a federally mandated clinical tool that assesses functional capabilities and assessments of NH residents participating in Medicare and Medicaid (Hawes, 1995).  The MDS serves as a standardized set of instruments that can be used in a variety of settings (Hirdes et al., 2000). There is not a single standardized catalogue specifically for QoL within NH (Bailey, Reardon, Wasserman, McKenzie, & Hord, 2012). As a result scores from the MDS Health Status Index (MDS-HSI), which is a comprehensive rating of data derived from the MDS (Thein, Gomes, Krahn, & Wodchis, 2010) is often used in conjunction with other instruments.  Once again highlighting how it is up to the professional to determine an appropriate assessment tool based on specific facets they are interested in measuring.

19. Strengths & Weaknesses of Scales  The SF-36 has shown strength in measuring physical functioning and cognitive well-being (Gandek et al., 2004; Ware & Sherbourne, 1992), but may be lacking in appropriateness of questions being asked specific to LTC (Andresen et al., 1999; Hayes et al., 1995).  The WHOQOL-BREF is strong at identifying QOL as a global concept (WHOQOL Group, 1998; Saxena et al., 2001), but may not be a sensitive to facets related to health specific issues (Huang et al., 2006).  The RSRQOL largest strength was that it was specifically created to identify and measure QOL in LTC (Kane et al., 2003), however it is limited due to how it must be administered (Degenholtz, Kane, Kane, Bershadsky, & Kling, 2006).  The EQ-5D has been successful in identifying cognitive decline in older adults (Coast et al., 1997), however, it is may be less sensitive than other instruments in discriminating severe health related impairments (Brazier et al., 1993; Myers & Wilks, 1999).  The AQOL best strength may also be its main weakness. The AQOL is able to identify subtle changes in QOL due the in depth scale used, but this level of detail creates a long scale that increase respondent burden (Holland et al., 2004).  The SIP-NH main strength is its shortened scale specifically designed for lower response burden in NH populations, however this brevity may be a weakness as it does not include social or environmental factors (Gerety et al., 1994).

20. Discussion  QOL is a broad term incorporating many facets of life. Furthermore, research indicates that understanding QOL on an individual level is vital in promoting positive outcomes in persons. QOL incorporates physical, mental, social, and environmental domains that are unique to different populations.  It is important for professionals interested in serving LTC to identify factors that are meaningful to individuals residing in ALF and NH. Ultimately, no one instrument is considered the “gold standard” and one shouldn’t be considered better than the other.  Some LTC populations may have individuals with better health status and are capable of responding to longer scales such as the AQOL. While other populations that are dealing with cognitive decline may be better served by using scales that require little response burden such as the SIP-NH.  By better understanding individual differences within LTC professionals are better suited to measure QOL based on one or more domains relevant to specific populations and promote positive outcomes related to QOL.  Finally, there may be instruments beyond the scope of what is presented here that have been used in LTC. The specific instruments presented were chosen for review due to the prevalence of previous literature indicating use in older adult LTC populations.

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