Systematic review of 29 self-report instruments for assessing quality of life in older adults receiving aged care services.

BACKGROUND: Quality of life (QoL) outcomes are used to monitor quality of care for older adults accessing aged care services, yet it remains unclear which QoL instruments best meet older adults', providers' and policymakers' needs. This review aimed to (1) identify QoL instruments used in aged care and describe them in terms of QoL domains measured and logistical details; (2) summarise in which aged care settings the instruments have been used and (3) discuss factors to consider in deciding on the suitability of QoL instruments for use in aged care services.
DESIGN: Systematic review. DATA SOURCES: MEDLINE, EMBASE, PsycINFO, Cochrane Library and CINAHL from inception to 2021. ELIGIBILITY CRITERIA: Instruments were included if they were designed for adults (>18 years), available in English, been applied in a peer-reviewed research study examining QoL outcomes in adults >65 years accessing aged care (including home/social care, residential/long-term care) and had reported psychometrics. DATA EXTRACTION AND SYNTHESIS: Two researchers independently reviewed the measures and extracted the data. Data synthesis was performed via narrative review of eligible instruments.
RESULTS: 292 articles reporting on 29 QoL instruments were included. Eight domains of QoL were addressed: physical health, mental health, emotional state, social connection, environment, autonomy and overall QoL. The period between 1990 and 2000 produced the greatest number of newly developed instruments. The EuroQoL-5 Dimensions (EQ-5D) and Short Form-series were used across multiple aged care contexts including home and residential care. More recent instruments (eg, ICEpop CAPability measure for Older people (ICECAP-O) and Adult Social Care Outcomes Toolkit (ASCOT)) tend to capture emotional sentiment towards personal circumstances and higher order care needs, in comparison with more established instruments (eg, EQ-5D) which are largely focused on health status.
CONCLUSIONS: A comprehensive list of QoL instruments and their characteristics is provided to inform instrument choice for use in research or for care quality assurance in aged care settings, depending on needs and interests of users. © Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.

Compared with the largest review of the topic to date, the current review contains an additional 16 quality of life instruments and provides a structured index of domains.

This review provides the first quantified demonstration of how self-reported measures of quality of life have developed over the past 40 years and the aged care setting where these instruments have been used.

Our review only included instruments applied to populations of older adults accessing aged care services.

Our review identifies current quality of life instruments used in aged care settings internationally and represents a first step in supporting choice of suitable instruments to be used for monitoring and evaluating quality of care in aged care service settings.

Introduction

Globally, the demand for aged care services has increased.1 Aged care services are designed to support older adults who require assistance to maintain independence for as long as possible (also known as home aged care, community aged care, social care) as well as supporting older adults who can no longer live at home (also known as assisted living facilities, long-term care (LTC), nursing homes, care homes or residential aged care). As the accountability of aged care services becomes increasingly important globally,1 2 there is a need to establish long-term and comprehensive measures of aged care service quality. Measures need to be easily operationalisable and capable of capturing information reflective of public expectations for high-quality, person-centred aged care services. One way to determine the quality and person-centredness of aged care services is to assess care outcomes which are important to clients and which are achieved at the client level.

Of aged care quality indicators used globally, recipient quality of life (QoL) outcomes are among the most highly valued and meaningful by aged care consumers and families.3 4 QoL is broadly defined as an individual’s perception of their physical health, psychological state, social relationships and environmental context.5 Despite the significance of QoL outcomes to aged care clients, and despite extensive development and experimentation with quality measures in aged care settings (eg, pressure injuries, falls, use of physical restraints, medication errors, involuntary weight loss), internationally, the collection of QoL outcomes is limited,6 however, more recent efforts on how QoL in aged care should be defined is emerging.7

Fundamental to the challenge of measuring QoL is selecting an instrument for use from the large variety of available QoL instruments. Despite the continued development of new instruments, no universally accepted measure has emerged, in part because there are no agreed conceptual criteria on what an instrument should contain, and no single measure can suit every purpose or application. Dimensions of QoL prioritised for measurement also vary across disciplines,8 and new instruments are regularly being developed to reflect new and more niche perspectives about factors of life quality.9 Despite efforts by the Organisation for Economic Co-operation and Development (OECD) to formalise the measurement of QoL, advice on how researchers can effectively use available instruments is lacking.6 Researchers and aged care providers who wish to measure QoL in older adults receiving care in home and residential settings tend to select instruments based on what is familiar to them within their discipline or organisation, what is most often used by others, or they create ad hoc purpose-built, non-standardised instruments.10

Despite the problems and barriers intrinsic to the collection of QoL outcomes, several countries have incorporated existing QoL measures into routine aged care evaluation and reporting practices.10 11 In Iceland and Canada, QoL scores of aged care residents are derived from data about the use of physical restraints, behavioural symptoms, among other objective measures.11 12 However, such measures do not provide insight into the experience of care, and therefore, do not necessarily correlate with the subjective experiences of clients. For example, a recent Australian study found no significant correlation between client care satisfaction and the use of physical restraints in aged care settings.13

Elsewhere, subjective client-reported measures are used alongside traditional objective indicators of QoL (ie, medication use, health status, mobility, pressure injuries). For example, departments of health in the UK, Denmark, Austria, Finland and the Netherlands routinely collect QoL outcomes using versions of the Adult Social Care Outcomes Toolkit (ASCOT),14 a QoL questionnaire which captures emotional and subjective sentiment towards personal circumstances and levels of satisfaction regarding care needs.15

In Australia, improving the QoL of aged care clients has been a stated policy objective for the last decade. In 2019, a new set of Aged Care Quality Standards which are applicable to aged care providers across all aged care settings were introduced,16 which state care providers should take steps to continuously improve client QoL. However, to date, no questionnaires or standardised measures to track client QoL have been mandated for use in Australia, although latest commissioned reports recommend universal QoL reporting in aged care.17 Recent reports of mistreatment and abuse of Australian aged care recipients underscore the need for standardised, comparable QoL measures.18

Previous reviews on QoL instruments have focused on their psychometric properties such as validity and reliability,19 20 with one review providing a comprehensive analysis of how instrument contents differ.21 However, these reviews are directed at younger adults (<65 years of age), do not describe how the instruments have been used within the aged care context, and review a limited set of instruments and instrument properties. Another review with aims matching our own is based on outdated evidence.22

A comprehensive review of current validated and implemented instruments that measure QoL both objectively and subjectively is needed to support the choice of instruments that are fit for purpose in aged care settings. In our review, our objective is to inform researchers, aged care practitioners and managers about the breadth, variety, and content of available measures of QoL that have been successfully applied in aged care settings. Specifically, we aimed to (1) identify QoL instruments used in aged care and describe them in terms of QoL domains measured and logistical details; (2) summarise in which aged care settings the instruments have been used and (3) discuss factors to consider in deciding on the suitability of QoL instruments for use in aged care services.

Methods

Search strategy

Studies were included in this review if they (1) contained the term ‘quality of life’, (2) studied and described an aged care population and (3) administered a standardised QoL instrument (ie, verbal QoL questionnaire or QoL self-assessment survey) on study participants, (4) represented original peer-reviewed articles and were not a systematic review or a conference proceeding. Search terms were therefore a combination of QoL assessment and older persons descriptors in aged care (ie, (QoL OR assessment) AND (older adults OR elder*) AND (care homes OR nursing homes OR residential aged care OR community care OR social care OR home-based care)). Articles were retrieved from the databases PsycINFO, PubMed, Cochrane, CINAHL and Embase from the earliest records until 29 January 2021 and included studies focusing on implementation or routine care. See online supplemental file for further information.

Studies were also identified through citations from relevant literature reviews focusing on QoL in older adults and checking reference lists of the included articles.

Study selection, data extraction and analysis

Database search results were exported into a reference citation manager. A random selection of 25% of the abstracts was screened by the research team. Inter-reviewer agreement was 90%, with disagreement on the inclusion of one paper, which was brought to the larger research team. Selected full-text articles were then obtained for the final screening. Final study selection was completed by two independent authors (JS and GTK) with a third author (JW) helping to resolve disagreements. Studies were excluded if: (1) study population had a mean age lower than 65; (2) if <50% of the study population was not accessing aged care services (eg, home/social care or residential/LTC); (3) the study was not peer-reviewed and did not improve primary research (eg, systematic reviews and conference proceedings); (4) study did not directly measure QoL and (5) only a portion of the instrument was described. Instruments were excluded if they were designed for children or adolescents or not a standardised instrument (ie, newly designed questionnaires for the purposes of a study without validated psychometric properties).

A purpose-designed data collection form on Excel workbook was tested and then used to capture qualitative and quantitative data and other relevant details of the included studies. Once an initial extraction of study details was complete, an evaluation of the identified QoL instruments was carried out. Information on the instrument properties was extracted, including: (1) domain measured; (2) administration details and (3) context of instrument application. Additional instrument details included mode of administration (eg, in person, on-line, paper form), the settings in which the instruments had been used, socio-demographic details of respondents, number of items, length of instrument, number of translations and versions, target population, required cost and any necessity for training. These details were principally extracted to gauge feasibility of applying the instrument in aged care settings. In addition, study-specific details were extracted including sample size, study design and setting (aged care service type, country where performed). Efforts were made to contact study authors for original QoL instruments.

Thematic analysis

Identified instruments were analysed using a thematic analysis approach.23 Facets of QoL (ie, health status, lived environment, social interaction levels) addressed by identified instruments were coded under domain categories. The review team (JS and GTK) examined the full set of instrument item domains, and combined domains under common headings when domains between instruments were indistinguishable or significantly associated. For example, question items such ‘depression levels’ and ‘depression diagnosis’ were clustered around the theme ‘psychological health’. Coding was undertaken by two reviewers (JS and GTK) and any discrepancies that arose were solved through discussion with the third member of the review team (JW). Themes were gradually assembled into larger similar domains. Once these domains were reviewed and amended by the review team, they were further refined and defined. In addition to instrument domains, the target populations of instruments were also recorded. It was anticipated that domains might overlap and that instrument items could conceivably be categorised across several domains; however, the categories provided by this technique afforded some order to the otherwise unmanageably large range of domains authors attributed to developed instruments. The review team included academics with backgrounds in psychology and aged care (JS), sociology (GTK), health economics and psychometrics (JR) and epidemiology/public health (JW), helping to minimise disciplinary biases. Results were synthesised as a narrative review.

Patient and public involvement

No patient involved.

Results

Identification of instruments

The PRISMA diagram summarises the search results, screening and reasons for exclusion of studies (figure 1). The database search produced an initial 2612 records of which 292 articles reporting on 29 QoL instruments were included. Table 1 and online supplemental file contain details on the instruments included in the final review. The instruments are either: (1) the original instruments if no revised version was found or (2) the latest revised version. A breakdown of when the instruments were first developed can be found in figure 2.

Figure 1

PRISMA diagram. PRISMA, Preferred Reporting Items for Systematic Reviews and Meta-Analyses; QoL, quality of life.

Table 1

Instrument domains

Target population	Instrument acronym	Physical health	Emotional state	Mental health	Social-connection	Environment	Personhood	Autonomy	Spiritual feeling	Overall question
Adult population	15-D
	A-QoL-8D
	COMQOL
	DUKE
	EQ-5D
	HUI2/3
	MANSA
	NHP
	OHIP
	SF series
	SWLS
	WHOQOL-BREF
Older adults	ASCOT
	ICECAP-O
	Inter-RAI (LTCF)
	LTC-QoL
	JoLS
	NHVQOL
	OPQOL
	PGCMS
	WHOQOL-AGE
	WHOQOL-OLD
Adults living with dementia	ADRQOL
	CAD-EOLD
	DEMQOL
	D-QOL
	QoL-AD
	QUALID
	QUALIDEM

ASCOT, Adult Social Care Outcomes Toolkit; DEMQOL, Dementia Quality of Life; EQ-5D, EuroQoL-5 Dimensions; LTC, long-term care; NHVQOL, Nursing Home Vision-Targeted Health-related QoL; QoL, quality of life; SF, Short Form; WHOQOL-BREF, WHO Quality of Life-Bref.

Figure 2

Historical development of quality of life instruments for older adults. ASCOT, Adult Social Care Outcomes Toolkit; EQ-5D, EuroQoL-5 Dimensions; SF-36, Short Form 36; QOL, quality of life.

Instrument domains

The identified QoL instruments were designed for use with three distinct populations groups (adults, older adults and adults living with dementia), and covered nine QoL domains in their assessment (table 1). Thirteen instruments were designed for use with adults generally, 10 were designed for use with older adults and 7 were designed for adults living with dementia.

Instrument developers often associated instruments with specific domains. However, there was no clear consensus regarding domains classification and definition. Consequently, we amalgamated similar domains between instruments under common domain definitions developed for this review. Based on a recent exhaustive systematic review of older people’s understandings of QoL, we further adjusted and expanded on domains identified in this review to incorporate aspects of QoL which are important to older people in OECD countries.24

The final nine instrument domains were: physical health, mental health, emotional state, social connection, environment, personhood, autonomy, spiritual connection and overall QoL.

Physical health refers to instrument items that addressed functional status, physical conditions and their related symptoms, pain, and perceptions of overall health. Mental health refers to items that capture mental and cognitive health conditions, as well as clinical symptoms that would indicate mental health problems. Emotional state refers to items which capture experiences of positive and negative emotions which are not obviously symptoms of mental health. This includes items which explore feelings of peace, calm, happiness and loneliness, among others.

Two domains identified relate to external circumstance and resources. Social connection refers to items addressing the frequency and quality of social interactions. Items addressing feelings of belonging, friendship and support were also categorised under this domain. Environment refers to items addressing living conditions and deployable resources. Included in this domain are items addressing satisfaction with social care services as well as items which ask respondents to reflect on the emotional, psychological and physical effects of living conditions.

Three domains related to existential beliefs and concerns of respondents. The domain personhood relates to items addressing levels of satisfaction with personally and culturally meaningful activities which provide joy and a sense of identity. This domain also refers to items that address identity continuity, and effects of ageing on identity and sense of self. Autonomy relates to items addressing capacity and satisfaction with one’s ability to manage activities of daily living. Emotion-centric items associated with dependence and autonomy are also categorised as relating to autonomy. Finally, the domain spiritual connection covers feelings of faith, and inner peace, as well as involvement in religious or spiritual practices like prayer. We also included an overall QoL theme, relating to single items asking respondents to rate their QoL as a whole.

Domains were often inter-related and multiple items were categorised across multiple domains. ‘Emotional state’, examined by 26 instruments, was the most frequently included theme. This was followed by ‘social connection’, examined by 24 instruments (82.3%), and ‘physical health’ which was examined by 19 instruments (65.5%). Although spiritual connection is significant to the QoL of many older adults,24 only one instrument, the JoLS, examined this domain. Of the instruments analysed, the WHO Quality of Life-Bref (WHOQOL-BREF) covered the largest range of domains. Overall, the instruments commonly captured objective and subjective concepts of the quantity or length of life and QoL, which varied between individuals’ health status and their ability to achieve physical, mental and social well-being.

Features of QOL instruments

All instruments contained multiple items, smallest being five items (ICEpop CAPability measure for Older people, ICECAP-O) and the largest containing 57 items (Nursing Home Vision-Targeted Health-related QoL, NHVQOL). However, some instruments were comprised of items which were abstract and/or difficult to answer, meaning the number of items did not uniformly determine expected completion times. Estimated completion times ranged from 1 to 3 min (Short Form-8, SF-8) to 40–60 min (Inter-RAI-LTC).

The fewest response options were found within simple yes/no questionnaires (ie, Philadelphia Centre Geriatric Moral Scale, PGCMS), while other instruments offered response options along a unipolar scale (ie, EuroQoL-5 Dimensions-5-level, EQ-5D-5L). Half of the instruments used five-point or four-point unipolar Likert scales (14/29, 48.3%). Items asked individuals about the frequency, intensity, strength of agreement or truth of specific and non-specific thoughts, feelings, experiences and statements. Instruments were named after academic affiliation (3/29, 10.3%) as with the Duke Health Profile (DUKE) and organisational affiliation (5/29, 17.2%) as with the World Health Organization Quality of Life (WHOQOL) instruments. However, for the majority of cases (21/29, 72.4%), instruments were named after their key concept or approach. For example, all of the instruments designed for adults living with dementia referenced this target population in their titles.

Furthermore, most instruments were developed with a theoretical influence15 25–45 (20/29, 69.0%), with the WHO definition of QoL46 (‘an individual’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns’) most frequently reported (8/21, 38.1%). Other theories included the capabilities approach,47–51 Seligman’s and Keye’s well-being theory,52–56 salutogenesis framework,52 Lehman’s conceptualisation of QoL,57 gap theory58–60 and adaptation-coping model.61 62

Dementia-specific instruments were based on theories such as the Kitwood’s Dementia Care Mapping Approach63 and the Lawton model,64 which proposes a conceptual understanding of the relationship between domains of health-related QoL and other areas of impact for individuals with dementia. Other disease-state specific instruments (eg, oral health) was developed using Locker’s conceptual model of oral health65 and the WHO’s International Classification of Impairments, Disabilities and Handicaps.66 One instrument (Health Utility Index, HUI) applied the von Neumann-Morganstern utility theory47 and the multiattribute framework,33 67 however, these frameworks were not related to QoL and were more focused on economics more generally.

It was unclear if the more commonly used instruments (eg, SF series, EQ-5D, and interRAI-LTC) were developed using a theoretical approach, however the development for these standardised, non-disease-specific instruments were conducted using a rigorous, reiterative approach to describe and value health states (eg, EQ-5D was developed from 14 members in 5 different countries, SF series from the Medical Outcomes Study Approach). Furthermore, more recent instruments (eg, ICECAP-O) were developed from the ground up using qualitative research to define their QoL conceptual attributes (eg, capability) rather than as an overarching theoretical approach.

Table 2 presents a comparison of the logistical factors associated with instrument use. Of the 29 instruments identified, 12 were designed for self-completion, 14 were intended to be administered via interview and 3 were designed for completion via proxy or via interview with a carer. Some instruments, such as the ASCOT, are currently available in interview, self-completion and proxy versions.15

Table 2

Summary of QoL instrument psychometric properties and administration characteristics

Instrument acronym	Developmental history and theoretical influence	Psychometric properties*			Administration characteristics
		Validity	Reliability	Responsiveness	Items (length)	Intended administration†	Translations	Fee	Registration	User guide	Website‡
15-D (1992)27	WHO27	Good88	Good88	Good88	15 (5 mins)	I	32	None	Yes	Yes	Yes
ADRQOL (1997)25	Concepts of QoL89	Poor70	Poor70	–	40 (10–15 mins)	P	6	Dependent on use	Yes	Yes	Yes
A-QoL-8D (2011)90	WHO90 91	Good26 90	Good92	–	35 (5 mins)	S	5	None	Yes	Yes	Yes
ASCOT-SCT4 (2012)15	NHS Outcomes Framework15 93–97	Good98	Good80	Good80	9 (5–10 min)	S; I	3	Dependent on use	Yes	Yes	Yes
CAD-EOLD (2001)99	Not stated99	Fair100	Fair100	–	14 (N/A)	P	1	Unknown	Unknown	Yes	N/A
COMQOL (1991)28	WHO28	Fair101 102	Fair101 102	–	44 (45 mins)	S	N/A	Not stated	Not stated	N/A	Yes
DEMQOL (2005)29	WHO46, Kitwood’s63 Dementia Care Mapping Approach, Lawton64 103 104,Wilson and Cleary105	Poor-Good29 70	Fair29 70	–	29 (less than 10 mins)	I	3	Not stated	Recommended	Yes	Yes
DUKE (1990)30	WHO	Fair30 106	Fair30 106	Fair107	17 (10 min)	S	21	Dependent on use	Recommended	N/A	Yes
DQOL (1999)31	Brod, Krueger31 108	Poor-Good70	Fair70	–	29 (10 mins)	I	4	Not stated	Not stated	No	Yes
EQ-5D (1990)32	Not stated109	Excellent110	Excellent110	Good110	6 (2–5 mins)	S	180	Dependent on use	Yes	Yes	Yes
HUI (1996)33	von Neumann-Morganstern utility theory111, multi-attribute framework33 67	Fair112	Fair112	-113	8 (3 mins)	P	38	Dependent on use	Yes	Yes	Yes
ICECAP-O (2006)34	Nussbaum, Robeyns and Sen’s capabilities foci47–51	Good114	Good114	Good80 114	5 (5–10 mins)	S	8	None	Yes	Yes	Yes
interRAI (LTCF) (2008)115	Not stated116	Good117 118	Good117 118	–	50 (40–60 mins)	I	11	Yes	Recommended	Yes	Yes
JoLS (2019)35	Salutogenesis52, well-being theory52–56	Good119	Good119	–	13 (N/A)	I	1	Not stated	Not stated	No	N/A
MANSA (1999)36	Lehman57	Fair36 120 121	Fair120	–	25 (30 mins)	S	3	None	Not stated	Yes	N/A
NHP (1980)122	Not stated	Poor to good123–126	Poor to good123–126	Fair124 127–129	45 (10 minutes)	I	19	Not stated	Not stated but licensing required	Yes	N/A
NHVQOL (2007)130	Not stated	Good130	Good130	Good131 132	57 (10–15 min)	I	N/A	Not stated	Not stated	Yes	N/A
OHIP (1993)37	Locker65, WHO66	Good133	Good133	–	49 (17 mins)	I	8	Not stated	Not stated	Yes	N/A
OPQOL (2009)38–40	WHO, Gap theory58 60 134	Good135 136	Good135 136		13 (N/A)	I	3	Not stated	Not stated	No	N/A
PGCMS41(1975)	Lawton41 104	Good137–139	Good137–139	–	17 (10 mins)	I	5	None	Recommended	Yes	N/A
QOL-AD (1999)42	Lawton104	Fair70	Poor70	–	26 (10–15 mins)	I; P	9	Dependent on use	Recommended	Yes	Yes
LTC-QOL (2005)140	Not stated	Good141 142	Good141 142	–	9 (N/A)	P	N/A	Not stated	Not stated	No	Yes
QUALID (2000)143	Not stated	Poor-Fair70	Poor-Fair70	Poor70	11 (5 mins)	P	3	Dependent on use	Recommended	No	Yes
QUALIDEM (2007)43	Adaptation-coping model61 62	Poor-Excellent70	Fair70	–	40 (10 mins)	P	2	Not stated	Not stated	Yes	N/A
SF-36 (1992)44	Not stated	Good144–148	Good145–147	Fair149–151	36 (10 mins)	S	N/A	None	Recommended	Yes	Yes
SWLS (1985)152	Not stated	Good153 154	Good153 154	–	7 (1–3 mins)	S	33	None	Recommended	Yes	Yes
WHOQOL-AGE 201345	WHO45	Good155 156	Good155 156	–	13 (N/A)	S	N/A	None	Yes	Yes	Yes
WHOQOL-BREF (1996)§45	WHO45	Good157	Excellent157	Good158 159	32 (15–20 mins)	S	27§	None	Yes	Yes	Yes
WHOQOL-OLD (2006)45	WHO45	Good135	Good135	–	24 (N/A	S	N/A	None	Yes	Yes	Yes

*Psychometric properties were defined according to the terminology from the COnsensus-based Standards for the selection of health status Measurement INstruments taxonomy68 of validity (which is further defined as criterion, content and construct), reliability (commonly known as test–retest) and responsiveness (defined as the ability of a measure to detect clinically important changes following an intervention.114 Properties can be defined as excellent, good, fair or poor. Where possible, psychometric properties are recorded according to the most recent systematic review of the instrument’s psychometric properties, and if this was not applicable then a search of articles assessing the psychometric properties of the instrument for older samples are summarised.

†S=self-administered; I=interview-administered; p=proxy.

‡Please refer to online supplemental material for specific website links related to the instruments.

§Based of available WHOQOL-100 translations, of which the WHOQOL-BREF is a shorter version.

EQ-5D, EuroQoL-5 Dimensions; LTC, long-term care; N/A, not available; NHS, National Health Service; NHVQOL, Nursing Home Vision-Targeted Health-related QoL; SF-36, Short Form 36; WHOQOL-BREF, WHO Quality of Life-Bref.

The SF series and the EQ-5D instruments were relatively short and simple to administer. Both instruments are short, contain simple, straightforward question items, are readily and freely available, have dedicated websites which offer user support, are accompanied by detailed user manuals, have been translated into a variety of languages, and can be administered by either interview or self-completion.

The extent of instrument translation varied. Some instruments were available in English only (eg, Comprehensive Quality of Life Scale (COMQOL), Nursing Home Vision-related Quality Of Life (NHVRQOL) and Long Term Care Quality Of Life assessment scale (LTC-QOL)), while others were available in up to 32 languages (eg, 15-D, WHOQOL-BREF), and 180 languages (eg, EQ-5D) other than English.

Table 2 further provides available information about the psychometric properties of the instruments. Reliability and validity metrics for older adult populations were searched for each included instrument and summarised according to the the COnsensus-based Standards for the selection of health status Measurement INstruments (COSMIN) taxonomy.68 All instruments were tested for both reliability and validity with the majority of instruments having good validity (16/21, 76.2%) and validity (16/21, 76.2%). There were 10 instruments (47.6%) that had been tested for responsiveness, with ASCOT-SCT4, ICECAP-O and EQ-5D able to adequately detect clinically important interventional changes.

Development of the instruments over time

Almost half of the instruments we identified had been first developed in between 1990 and 1999. As shown in figure 2, the oldest instrument was developed in 1975 (Philadelphia Geriatric Centre Moral Scale, PGCMS), while the newest instrument was developed in 2018 (Joy-of-Life Scale, JoLS). Since 2000, 13 instruments have been designed. The 1990s saw the development of eleven new instruments.

Many of the newer measures contained fewer items or were accompanied by SF versions. Further, over the past 15 years, there have been significant efforts to move towards questionnaires that focused more on social health, care and participation. Examples of these instruments include the Quality of Life In Late-Stage Dementia (QUALID, 2000), the ICECAP-O (2006) and the ASCOT (2012). Finally, instruments that were purpose built for older people have become more prevalent, although the oldest instrument identified was designed for older people initially in 1975 (PGCMS). The 1990s in particular produced a significant influx of instruments designed for older adults and for adults living with dementia.

Application context

Table 3 presents a summary of the six contexts in which the selected articles have used the QoL instruments. These contexts included: home care (ie, services offered at home and in the community to support independent living, also known as community-aged care, social care), support centre (ie, a place which provides care and/or recreational opportunities and facilities for older adults who cannot be fully independent. These include but are not limited to senior centres and adult day centres), residential aged care (ie, a place that provides older adults with accommodation and personal care, as well as access to nursing and general healthcare services, and are commonly known as nursing homes, LTC, care homes or residential aged care facilities), associated living group facilities (ie, primarily provides personal care in a home-like, social and group setting, for instance group living homes, supportive housing units, other special accommodations), training facilities (ie, places that offer improvement in a particular area, such as cognitive training facilities, off-site training facilities, exercise clinic or memory clinic), and primary care (ie, healthcare provided in the community for older adults).

Table 3

Application of QoL instruments across country, context setting and study design

Instrument	No of articles	Countries of use	Context of use						Population total	Mean age (SD)	Study design¶
			Home care*	Support centre†	Residential aged care	Assisted living group facilities‡	Training facilities§	Primary care
15D	3	Finland							227	83 (0.5)	O; R
ADRQOL	14	Denmark; Germany; Norway; USA; Spain							2544	83 (3.4)	N; O; R
AQoL	6	Australia; Malaysia							1136	76 (4.3)	O; R
ASCOT	9	Australia; The Netherlands; UK; Japan; Germany							32 433	80 (3.4)	O; R
CAD-EOLD	2	Belgium							101	85(-)	O; R
COMQOL	1	Australia							187	78(-)	O
DEMQOL	13	Australia; The Netherlands; UK; USA							5537	85 (3.0)	N; O; R
DUKE	1	France							1306	85(-)	O
D-QoL	9	Australia; France; Japan; Norway; The Netherlands; UK; USA							1826	84 (1.7)	O; R
EQ-5D	52	Australia; Belgium; Canada; China; Denmark; Germany; Hong Kong; Hungary; Lebanon; Malaysia; New Zealand; Romania; Singapore; South Korea; Spain; Sweden; The Netherlands; UK							22 866	82 (3.5)	N; O; R
HUI2/3	7	Canada; Germany							572 411	82 (3.1)	O; R
ICECAP-O	5	Australia; Germany; The Netherlands; Spain							763	82 (3.4)	O
InterRAI	5	Canada; Germany							566 885	79 (1.1)	O; R
JoLS	1	Norway							188	87.4(-)	O
MANSA	3	The Netherlands							468	71 (2.9)	O
NHP	8	Finland; Germany; Spain; The Netherlands; Turkey							2653	81 (3.8)	N; O; R
NHVQOL	7	Australia; Nepal; USA							1381	81 (2.8)	N; O; R
OHIP	1	Sweden							41	87 (-)	O
OPQOL	5	Australia; Italy; Philippines; Norway							706	79 (5.9)	O
PGCMS	2	The Netherlands; Germany							364	84.3 (0)	O
QoL-AD	39	Australia; Brazil; Canada; Denmark; Estonia; Finland; France; Germany; Norway; Spain; Sweden; Switzerland; The Netherlands; UK; USA							10 576	84 (3.2)	N; O; R
QoL-LTC	1	Australia							28	86(-)	O
QOLNHR	1	USA							62	82(-)	O
QUALID	22	Australia; Italy; Norway; Spain; Sweden; The Netherlands							6061	85 (1.2)	O; R
QUALIDEM	19	Germany; Japan; Switzerland; The Netherlands							3526	84 (2.0)	N; O; R
SF-8	5	Japan; USA							910	81 (5.2)	N; O
SF-12	24	China; Germany; Hong Kong; China; Japan; Sweden; The Netherlands; USA							5460	81 (4.4)	O; R
SF-36	47	Australia; Belgium; Canada; China; Germany; Iran; Italy; Nepal; Malaysia; New Zealand; Norway; South Africa; Spain; Sweden; The Netherlands; Taiwan; Turkey; UK; USA							11 333	79 (5.7)	N; O; R
SWLS	6	Canada; Italy; Hong Kong; The Netherlands; USA							4379	82 (2.8)	N; O
WHOQoL-100	2	China; Iran							297	85 (5.2)	O; R
WHOQoL-AGE	1	Poland							176	75(-)	O
WHOQoL-BREF	23	Brazil; Croatia; Czech Republic; Finland; Germany; Hong Kong; Hungary; Indonesia; Italy; Jordan; Poland; Portugal; Spain; Sri Lanka; The Netherlands; Turkey							6624	78 (6.1)	N; O; R
WHOQOL-OLD	4	Brazil; Czech Republic; Turkey							581	78 (5.5)	O

*Services offered at home and in the community to support independent living.

†A place providing care and recreation facilities for older adults who cannot be fully independent. This includes senior centre, adult day centre and day centre.

‡Includes group living homes, supportive housing units, sheltered housing units, special accommodation.

§Includes cognitive training facilities, off-site training facilities, exercise clinic and memory clinic.

¶Study designs types include observation studies (O), non-randomised trials (N) and randomised control trials (R).

ADRQOL, Alzheimer’s Disease-Related Quality of Life; AQoL-8D, Assessment of Quality of Life instrument – 8D Version; ASCOT, Adult Social Care Outcomes Toolkit; CAD-EOLD, Comfort Around Dying-End of Life in Dementia; COMQOL, Comprehensive Quality of Life Scale; 15-D, 15-Dimensional instrument; DEMQOL, Dementia Quality of Life measure; DQOL, Dementia Quality of Life Instrument; DUKE, Duke Health Profile; EQ-5D, EuroQoL-5 Dimensions; HUI, Health Utility Index; ICECAP-O, ICEpop CAPability measure for Older people; JoLS, Joy-of-Life Scale; LTC, long-term care; LTC-QOL, Long Term Care Quality Of Life assessment scale; MANSA, Manchester Short Assessment of quality of life; NHP, Nottingham Health Profile; NHVQOL, Nursing Home Vision-Targeted Health-related QoL; OHIP, Oral Health Impact Profile; OPQOL, Older Peoples Quality Of Life; PGCMS, Philadelphia Geriatric Centre Moral Scale; QoL, quality of life; QOL-AD, Quality of Life in Alzheimer’s Disease; QUALID, Quality of Life In Late-Stage Dementia; QUALIDEM, Dementia Specific Quality of Life Instrument; SF-8, Short Form 8; SWLS, Satisfaction With Life Scale; WHOQOL- AGE, World Health Organization Quality of Life Scale - AGE; WHOQoL-BREF, WHO Quality of Life-Bref; WHOQOL-OLD, World Health Organization Quality of Life Scale - OLD.

Some instruments were used in one or a few studies and across a limited sample of older people (eg, COMQOL, DUKE, Oral Health Impact Profile (OHIP)), while others were used extensively across study types, countries and aged care settings (eg, EQ-5D, QOL-AD, SF series). The latter have also been used in range of study designs such as randomised control trails, quasi-experimental and observational studies.

The SF series (SF-36, SF-12 and SF-8) was the most rigorously adopted instrument used to assess QoL in aged care settings (76 studies), followed by the EQ-5D (49 studies) (see table 3). The HUI2/3 was applied to the greatest number of older adults (N=572 411), followed by the inter-RAI (N=566 885) and the ASCOT (N=32 433). Despite the ASCOT being the third most recently developed instrument (developed in 2012), it has been used in large cohort studies assessing over 30 000 older adults. The EQ-5D and the SF-36 were the most widely applied instruments across settings (eg, senior centres, clinics, assisted living facilities and residential aged care facilities).

Generic preference-based instruments were further identified and include the ASCOT, SF-6D, EQ-5D69 measures which incorporate weighted scoring algorithms based on the preferences of general population sample and are therefore amenable for economic evaluation in addition to quality assessment. Generic non-preference-based instruments (eg, WHOQoL-Bref, OPQOL) were also recognised and are not suitable for economic evaluation but can be suitable for quality assessment.

Discussion

This review provides a comprehensive examination of standardised QoL instruments and how they have been used in aged care settings over time. We identified 293 studies reporting on 29 instruments which have been used to gauge older adults’ QoL in multiple aged care settings. In the last decade, QoL instruments have tended to highlight emotional and subjective needs of the older adult’s personal circumstances, compared with earlier instruments that were fixated on older adults’ physical health condition.

Although previous reviews have reported on the use of QoL instruments in aged care settings, knowledge of how QoL measures have been applied in aged care settings is incomplete. Existing reviews have focused on condition-specific instruments, such as those suitable for adults living with dementia70 or hip fractures,71 or on analysing particular instrument properties, such as suitability for economic analysis.69 72 73 We found one recent review with aims similar to our own, however, that review focused on and was restricted to instruments which had undergone feasibility testing in aged care environments, and identified only 13 instruments.20 Furthermore, the review did not consider instrument feasibility (ie, time to administer) or the contexts of instrument application (ie, number and type of respondents),20 which is useful information on how instruments can be used for specific purposes, such as for research or for care quality assurance in aged care settings.

Our review enriches current knowledge by providing a broad and inclusive analysis of the characteristics of QoL instruments used across multiple contexts in which aged care is delivered. Similar to Garratt et al,59 we found a significant increase in the production of instruments designed for older people and/or adults living with dementia over time; all identified instruments designed after 2000 were population specific (eg, age, neurological condition). We also identified a degree of convergence over time towards greater coverage of subjective and person-centred conceptualisations of life quality, and a decrease in focus on physical health. Five out of the nine instruments designed after 2005 did not equate poorer physical health and limited capacity for independence as an indication of reduced life quality. Rather, instruments such as the ASCOT or ICECAP-O tended to capture emotional and subjective sentiment towards personal circumstances and levels of satisfaction regarding current physical health and higher-order needs (ie, companionship, dignity, love). This convergence has largely been a result of recent policy reform in the UK and Western Europe, which has sought to ensure that the higher-order needs of aged care recipients are accommodated.35 74 75

Several factors will inform the suitability of identified instruments for use in aged care settings. Decisions about instrument suitability will need to take into account the extent of instrument alignment with current evidence on older adults’ QoL; logistical factors involved with administration—shorter tools written in plain language are often more appropriate for many older people76; whether or not instruments have been psychometrically tested; and evidence of instrument appropriateness for use with targeted aged care populations. Amenability to economic evaluation and instrument alignment with policy objectives of state and national governments may also influence decisions around instrument suitability, particularly when selecting instruments for quality assurance and indicator purposes.

No single instrument stood out unequivocally as best suited for use in aged care settings. The suitability of instruments, particularly those designed for specific aged care populations such as adults living with dementia, will vary across aged care contexts and populations and the aims or goals of instrument administration. Moreover, we noticed a positive correlation between QoL domain coverage and the number of instrument items, suggesting that ideals of instrument comprehensiveness trade-off against ideals of instrument simplicity and ease of use. For example, while the SF series and EQ-5D instruments are readily available and are logistically feasible for use in aged care settings, they do not adequately capture aspects of life quality which are often important to older people (ie, existential and spiritual matters24 77) and only partially emulate outcomes reflective of the current aims of aged care services in Australia78 and other OECD nations. Furthermore, instruments that capture a multidimensional profile can be very useful in specific circumstances, for example for intervention trials where detailed information on individual QoL domains may be required. However, there are situations in which a profile is less useful, and a single index is required. This is especially so in evaluative studies, for example, in assessing cost-effectiveness.

Other instruments, such as the ASCOT and ICECAP-O, designed to capture aspects of QoL important to older people, were less frequently used, have been less psychometrically validated69 73 but may be more suited to Australia’s aged care context. The ASCOT and ICECAP-O have been designed in mind for European policy objectives—namely to establish methods of capturing the effectiveness and quality of social care services for older adults75—which are analogous to current policy objectives in Australia. Both instruments have been elsewhere endorsed by some organisations4 79 for use for performance monitoring in Australia, although use alongside the SF series and the EQ-5D may be warranted as neither the ASCOT or ICECAP-O consider physical and mental health domains. Nonetheless, being conceptually focused, the ASCOT and ICECAP-O are better equipped to facilitate a more targeted assessment and are amenable to economic analysis.80

Adults living with dementia make up 53% of residential care clients in Australia, 48% in the USA, and 69% in the UK.6 There is a fundamental need to determine and capture what is important to aged care clients living with dementia to form a coherent basis for guiding quality improvement and policy decisions.6 Of dementia-specific instruments identified in this review, the QoL-AD was the most widely used, although elsewhere this instrument has been found less psychometrically sound compared with other dementia-specific instruments such as the Dementia Quality of Life (DEMQOL).81 However, compared with the QoL-AD, we found other dementia-specific instruments to be more exclusively health-orientated and to cover fewer domains. The QoL-AD may be suitable for use in the Australian aged care context as it is currently capable of supporting economic analysis of care services82 alongside the DEMQOL83 and non-dementia-specific measures (ASCOT, ICECAP, EQ-5D69).

Evidently, consideration of a multitude of factors is necessary for the meaningful collection of QoL outcomes in aged care. It is also evident that no single instrument will be suitable for use for aged care clients generally. As has already been suggested by the Council on the Ageing, should the collection of QoL outcomes be mandated in Australia, given the heterogeneity of aged care settings and clients, inclusions of QoL metrics should allow providers a degree of flexibility to apply instruments relevant to aged care clients in question.36 Effective collection will require instruments which are embedded with person-centred content, are phrased and administered using culturally sensitive and age-appropriate language, and which allow for economic evaluation and comparison between providers.7 84 Developments in this space are, however, encouraging, with recent studies identifying leading QoL dimensions relevant to older people receiving aged care services7 to support economic evaluation.85

Strengths and limitations

We limited the inclusion criteria to instruments used for older adults receiving aged care services. This decision was justified on pragmatic grounds in order to keep the review more focused on measures for use with older adults; extensive literature and inconsistent phrasing remain significant challenges for those conducting systematic reviews on the topic of QoL. It is unlikely that any search strategy could collate a definitive list of instruments; however, the approach taken in the current work is able to complement the selective reviews already in existence. In contrast to the psychometric focus of previous reviews,20 70 our objective was to inform researchers and care providers about the domains available, the thematic differences among instruments, and their use within aged care. While we have provided a preliminary overview of the psychometric properties of the included instruments to further guide instrument choice and use, collatable evidence relating to psychometric properties of many instruments used in aged care homes has been systematically and comprehensively reviewed elsewhere.20 Further research should investigate the psychometric properties of this wider set of instruments, with a specific focus on content and construct validity. Merging these strands of work should strengthen the methodological quality and our understanding of the subject.

Implications

Our work identifies current QoL instruments used in aged care settings internationally. It represents a first step in supporting choice of suitable instruments to be used for monitoring and evaluating quality of care in aged care service settings. Implementation of regular measurement of QoL in aged care and publication of such information will likely encourage more comprehensive benchmarking for organisations and service providers. Ability to examine benchmarks and trends over time may also enable aged care consumers and their families to make evidence-based decisions that are personally relevant, needs-specific and to support maintenance of QoL as they age. Although some aged care providers in Australia have incorporated QoL instruments to track quality of care on their own initiative,4 no providers currently publicise QoL outcomes to inform consumer choice. Notwithstanding, evidence demonstrates QoL instruments are reliable, used and readily accepted by care staff and can lead to an enhanced understanding of older adults’ needs.86 87

Conclusion

Ultimately, tracking the physical, emotional, social and existential needs of older people requires standardised measurement and valuation of QoL measures that are applicable across the aged care sector. Our comprehensive overview of available instruments, their characteristics and use in aged care settings, provides an important resource for governments, aged care services and the aged care workforce. The evidence we created may support decision-making when choosing QoL measures for research and for care quality monitoring in aged care. The wide variety of QoL instruments identified in our review serves as an important reminder that the choice of the most appropriate instrument will depend on the domains of interest, psychometric properties and feasibility of administration in various aged care contexts.