Discussion

This study aimed to add usefully to existing reviews of the literature (Bowling et al., Reference Bowling2015; Ready and Ott, Reference Ready and Ott2003). Aspden et al. (Reference Aspden, Bradshaw, Playford and Riazi2014) by assessing the usability properties of instruments in care homes in addition to psychometric properties and study quality. This provides broader information on the pragmatic use of dementia-specific QoL instruments in care homes, which is likely to be of value to researchers, clinicians, and practitioners when selecting instruments for use both in research and in normal practice.

Twenty-five studies were identified that assessed nine dementia specific QoL instruments for use in care homes. This review highlights that even though QoL instruments exist for use in care homes, they may not be accessible or feasible for use. There was limited information about the psychometric properties of most instruments; as a consequence many elements were not assessed. COSMIN scores that were assessed had relatively low ratings with the majority of ratings being poor or fair. The instruments with the most psychometric evidence were QUALID and QUALIDEM. The QUALID instrument had the most extensive evaluation of the two, with seven domains assessed, however, QUALIDEM had better ratings for most of the assessed properties with more excellent and good ratings compared to QUALID. The QUALIDEM has previously been suggested as the best QoL instrument to use for people with dementia in care homes due to the comprehensive assessment of its measurement properties (Aspden et al., Reference Aspden, Bradshaw, Playford and Riazi2014).

The QOL-AD instrument is one of the most widely used QoL instruments due to its good psychometric properties and apparent ease of use (Bowling et al., Reference Bowling2015). However, findings from the review show limited use of the QOL-AD in care settings, with the original QOL-AD only identified in one study, and the nursing home version identified in six studies. The QOL-AD NH instrument, which is adapted from QOL-AD was assessed in six studies; however, the ratings were mainly poor or fair. These findings are in line with a previous review which found that the QOL-AD NH properties were poor because of small sample sizes and methodological quality of the studies (Aspden et al., Reference Aspden, Bradshaw, Playford and Riazi2014).

It is widely accepted that measuring QoL in care settings is important. This is usually carried out as a part of research with the focus being to understand changes to QoL over time or to assess outcomes of interventions (Clare et al., Reference Clare2014b; Hoe et al., Reference Hoe, Hancock, Livingston, Woods, Challis and Orrell2009). There is, however, an additional need and potential benefit in understanding the QoL of care home residents outside of research, in routine care practice. The lack of routine measurement of QoL in care homes will be in part due to differences in the current instruments and a lack of consensus about what a QoL instrument should contain. The frameworks of QoL in dementia underpinning each instrument influence and shape the instrument and its content (Missotten et al., Reference Missotten, Dupuis and Adam2016). The instruments discussed here are based on a small number of models. Most are based solely, or in part, on the work of Lawton (Missotten et al., Reference Missotten, Dupuis and Adam2016), which states that QoL in dementia is multidimensional and consists of both objective and subjective components. A health-related QoL definition, which only includes aspects of QoL affected by a health condition, and the adaptation-coping model, which is concerned with adaptation to the consequences of dementia (Dröes et al., Reference Dröes, van Mierlo, van der Roest and Meiland2010) have also been used. However, it is often not clear what conceptual framework instruments are based on, and what assumptions are made (Bowling et al., Reference Bowling2015; Missotten et al., Reference Missotten, Dupuis and Adam2016). This may dissuade some from using QoL instruments, and the differences in the content of instruments may influence whether or not specific instruments are used. This, coupled with what it is that practitioners, researchers, or clinicians want to gain from measuring QoL will influence the decision about what instrument to use. However a fundamental problem is likely to be limited access to and experience of QoL instruments as well as a lack of requirement by regulators to use such approaches. Most are difficult to find and access online; often requiring contacting the original author or registering with online instrument repositories to request access to specific instruments. This will be difficult for care staff who may not be aware of the different instruments available and may not have the skills and resources needed to identify them.

Routine use of QoL instruments might be of value at an individual resident level and also at an aggregate level providing insights into the QoL of residents as a whole and indirectly the home as a whole. QoL measurement has the potential to improve the provision of person-centered or holistic care by encouraging care staff to focus more on the individual and less on impairments of function (Edvardsson et al., Reference Edvardsson, Sandman and Borell2014). The inclusion of an instrument to specifically measure QoL in normal care practice, and used in conjunction with existing care practices, procedures, and documentation, could enhance the opportunity to improve care quality by providing more person-centered information on residents and providing feedback on the effect of changes over time. In the US, a comprehensive assessment of a variety of care features is completed for residents in long-term care facilities. The Resident Assessment Instrument (RAI-NH) is completed periodically to collect and record relevant information about resident care. The aim of its use is to inform holistic care and ensure good QoL and quality of care. Implementation and use of the RAI-NH has been shown to be associated with improvements in resident outcomes (Fries et al., Reference Fries, Hawes, Morris, Phillips, Mor and Park1997; Phillips et al., Reference Phillips1997). The integration of a QoL instrument into such a system and used regularly could enhance the assessment of resident outcomes by providing complementary information and therefore a broader understanding of wellbeing of the resident and when aggregated further insights into the quality of the care home. In the UK and many other countries there is no such mandated combined assessment schedule in the care sector and no culture of routine measurement; resident and care factors are documented by staff, in a less systematic manner than in the RAI-NH. Therefore, integrating QoL measurement into routine care practice would need a different approach. Regardless of the systems that currently exist in homes, such action would require appropriate instruments that are accessible for and usable by care home staff. Of all the instruments that were available, the QOL-AD, QUALIDEM, and ADRQL revised were accessible via simple internet searches and had a dedicated web page. Importantly, many of the measures were difficult to access, and required contacting the original author (e.g., DQoL). Overall, the QUALIDEM was assessed as the most accessible; being free to use, with all information regarding administration and scoring available in an extensive user guide. However, although an English language version of QUALIDEM is available, it has not been validated in an English sample as far as could be determined from this review. Therefore, despite QUALIDEM being the most psychometrically robust and accessible instrument there is still some concern regarding whether it is suitable for use in an English-speaking sample and setting.

In this review we focus on dementia-specific QoL instruments. A previous review by Aspden and colleagues suggested that one instrument should be used for people with dementia and another for people without dementia (Aspden et al., Reference Aspden, Bradshaw, Playford and Riazi2014). We understand the clarity of purpose behind this, but believe that in routine care practice, when those with dementia are in the majority, it may be preferable to use a single dementia-specific instrument for three main reasons. First, using two different instruments makes it difficult to aggregate scores for homes overall, and changes to resident status (from no diagnosis to diagnosis) would require a change in instrument, thus meaning a lack of consistent measurement for that individual resident over time. Second, dual measurement is dependent on an accurate diagnosis of a dementia having been made for each resident and this is unlikely to be the case. Diagnosis rates in the UK are amongst the highest in the world but are still only around 67% (Department of Health, 2016). Many without a formal diagnosis of dementia in care homes will in fact have dementia, and evidence of high prevalence of dementia in care homes mean that most residents would be appropriate for the use of a dementia-specific QoL instrument (Jagger and Lindesay, Reference Jagger and Lindesay1997; Livingston et al., Reference Livingston2017). Finally, the questions contained in QoL instruments need to be appropriate for people with dementia and for use in care settings. Few generic measures of QoL have been developed specifically for use in care home settings, and very few have been validated in this setting. They can, therefore, contain inappropriate questions, often reflecting the opportunity to perform a function rather than the ability to perform it (Hall et al., Reference Hall, Opio, Dodd and Higginson2011). We believe that the content of dementia-specific QoL instruments may be a better fit for care home residents, even those without dementia, than generic instruments. This can be posed as an empirical question and requires research to be done to test this hypothesis. On balance we believe a strategy of dual measurement may introduce more measurement error than it prevents with the addition of unnecessary complexity.

Despite differences in the content of instruments and the findings presented in this review, the use of existing QoL instruments is preferable to using no QoL instruments at all. They provide potentially valuable information compared with not using them. There is, however, a need for the development of instruments that are developed and/or validated to measure QoL in care home settings and that are accessible, easy to use, and contain appropriate questions. The future development and adaptation of instruments needs to consider these care-home specific points to create instruments that are of demonstrable benefit and lead to the wider use of QoL instruments in care homes.

In this review we do not recommend the use of one instrument as being the best or most appropriate to use. Instead, because there is no gold standard instrument, we argue that there are factors other than psychometric properties that should be considered when deciding on an appropriate instrument to use in care settings, particularly if the care staff will be involved in collecting data. We conclude that new instruments need to be developed either from existing measures or de novo that are specific to the care home setting, that have acceptable psychometric properties and that are readily accessible and usable in these settings. Deciding on what instrument is the most useful in care settings is difficult given the differences in care homes themselves. Issues of time and resources and the benefit that accrues from their use will always be to the fore, so data on these parameters are needed. The development or adaptation of instruments that can be used in care homes by both researchers and by care staff routinely in normal care practice would be useful. If adapted, the content of such instruments would need to remain largely the same to maintain reliability and validity of the instrument. However, the format or layout of the instrument questions, and user guides or instructions would need to be adapted for use in care homes and by care staff. Researchers will be specifically trained and experienced in using standardised instruments and are likely to have more time to complete instruments. Care staff are likely to need more specific guidelines to follow and a layout that reduces the risk of recording error and missing data.

It is important to highlight several limitations of this review. First, this review did not include all measures of dementia-specific QoL, because they did not meet inclusion criteria of this review. For example, the Philadelphia Geriatric Centre Affect Rating Scale (PGC-ARS) (Lawton et al., Reference Lawton, Haitsma and Klapper1996) and the Resident and Staff Observation Checklist Quality of Life measure (RSOC-QOL) (Sloane et al., Reference Sloane, Mathew, Scarborough, Desai, Koch and Tangen1991) were not included in this review despite being included in a review by Aspden and colleagues as the instruments were not assessed to be measures of QoL (Aspden et al., Reference Aspden, Bradshaw, Playford and Riazi2014). Second, there is no established means of assessing the usability of instruments in care homes, and therefore interpretation of what is considered “accessible” or “practical” may differ depending on the user. Third, this review focused on disease-specific instruments of QoL and makes the assumption that the majority of residents in a care home would have dementia; this may not be the case and could affect the validity of instruments. Finally, this review only included articles published in English, meaning that non-English instruments may not have been captured.