A scoping review of the use of visual tools and adapted easy-read approaches in Quality-of-Life instruments for adults

For decades, there has been broad agreement among researchers, health professionals, policy makers and administrators regarding the importance of quality assessment across health and social care systems [1‐3]. Despite this, there is still no single agreed ‘gold standard’ approach for measuring quality of care. Of the quality of care assessment models and frameworks that are available, the majority include some component of measuring the outcomes of care provided from the perspectives of care recipients themselves [1, 4]. In practice, clinical outcomes (e.g. physiologic markers, mortality or measures of morbidity) have taken the lead as the predominant approach for measuring care outcomes. Such indicators have come under criticism for potential difficulty in their interpretation and lack of meaning to the recipients of care themselves [1]. Additionally, clinical outcomes do not necessarily maintain their meaning and significance across multiple clinical populations. For example, weight loss among people experiencing overweight or obesity-related health conditions may be viewed positively. By comparison, weight loss among frail elderly people would be considered a poor outcome [5]. These challenges, along with the momentum gained from the social movement for involving patients and consumers in planning, managing and evaluating the health and social care they receive, has led to the rise of patient-reported outcome measures (PROMs) focused on quality of life (QOL) [6].

QOL is one of the most highly utilised PROMs in health research [7]. The maximisation of QOL for patients is acknowledged as the ultimate aim of health and social care [8]. By definition the measurement of QOL is subjective, incorporating the person’s own judgement of their current health and wellbeing in comparison with their expectations for those domains of their lives [9]. Increasingly there have been calls to include QOL as a key quality indicator across both health and social care settings [10]. Presently, a wealth of validated QOL instruments are available for application across a range of different health conditions and settings including generic QOL instruments (such as the EQ-5D-5L or WHOQOL suite of instruments) [7] and condition-specific instruments (for example the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) or the Quality of Life in Alzheimer’s Disease (QOL-AD)) [7].

While instruments differ in composition, length and complexity, generally they take the form of text-based multiple-choice descriptive systems, requiring reading comprehension and written expression skills to complete. The vast majority of the commonly used instruments are not inclusive of people with diverse communication needs, low literacy or perceptual or cognitive difficulties [11]. Consequently, people with diverse communication needs are often excluded from QOL and outcomes research despite this population comprising a relatively large proportion of those utilising health and social care services [12‐14]. The World Health Organization estimates over 1 billion people, equivalent to over 15% of the world’s population, live with a physical, sensory, intellectual or mental health impairment which impacts their daily lives [15]. Additionally, on average 20% of the population in OECD countries is either illiterate or has very low literacy skills, impacting on their ability to engage with institutional processes and health information in a written form [16]. The majority of older people receiving aged care services in Australia have some form of cognitive impairment or dementia [17, 18]. Thus, individuals who may find it difficult or impossible to complete traditional text-based PROMs are relatively common among those seeking and using health and social care services. In these settings, proxy assessment of QOL by family members or care providers is often used as the default option [19]. However, it is now acknowledged that proxy respondents are not a direct replacement for self-report of PROMs, due to evidence of systematic differences in the way that proxy assessors respond to questions about the QOL of the person compared to the person themselves [20, 21]. Empirical comparison studies incorporating self and proxy assessment generally find poor to moderate levels of agreement, especially for less easily observable psychosocial focused QOL domains as opposed to physical QOL domains. Generally, for populations of older people it has been found that overall QOL scores (either raw scores or scores converted into utilities) reported by proxy are lower than those reported by older people themselves, and that the difference in scores tends to increase over time [20]. These factors lead to a significant gap in our understanding and consequently our ability to provide high quality care services meeting the needs of the diverse population accessing health and social care services [12, 14, 22]. Presently the voices of large proportions of those accessing services (and particularly vulnerable to having poor QOL e.g. older adults with cognitive impairment and dementia, adults with intellectual impairments and/or sensory difficulties) are not being heard as we do not have appropriate communication accessible QOL instruments to facilitate self-reporting of QOL for quality assessment and evaluation in these populations [10].

Accessible communication techniques include, but are not limited to, pictures, pictograms, easy read or easy-English approaches, or modified layout or presentation of information. It is often assumed that people with communication difficulties, disability, or dementia are unable to speak for themselves [14, 23‐25]. It is increasingly being recognised that such a diagnosis should not exclude a person from having the opportunity to fully contribute to evaluating the care they receive [26‐28]. The onus is on the research community to develop better methods to facilitate the maximal inclusion of people who experience a range of cognitive and communication difficulties in self-assessment of their own QOL wherever possible. It has been identified that people with mild or moderate dementia can provide reliable answers on QOL instruments providing that the methods used to assess QOL support their communication needs [29]. Research has shown that adapted communication approaches, such as easy-read techniques, or visual representations of concepts can be successfully applied with groups including people living with intellectual disability, post-stroke aphasia, or culturally and linguistically diverse (CALD) background to support or replace written communication methods [30‐32]. However, the extent to which these approaches have been successfully applied in existing QOL instruments is currently unknown.

Therefore, the aim of this review was to identify and describe existing QOL instruments which have used an adapted communication approach for use with adults. A secondary aim was to report the methods used in the development and validation of these instruments.

A scoping review methodology was undertaken according to PRISMA extension guidelines [33, 34]. The protocol was prospectively registered with the Open Science Framework (https://​doi.​org/​10.​17605/​OSF.​IO/​27RGS).

This review identified 21 QOL instruments which included an accessible communication component. Although we included QOL instruments developed for any population aged over 18 years, this review identified that the majority had been developed for use with people living with post-stroke aphasia or people living with a disability more generally (usually people living with an intellectual disability). The use of accessible communication methods in QOL instruments has been an area of focus more recently, with the majority of studies published from 2017 onwards. This relatively recent focus corresponds with the increasing emphasis in policy and practice for inclusion of consumer voices in assessing care quality and in health research more generally [15, 77‐79].

As researchers have sought ways to gain the authentic involvement of people receiving health and social care services including in the evaluation of the quality of care, the diverse communication needs within populations accessing health and social care has become more apparent [80, 81]. Subsequently, the deficiencies of the ‘one-size fits all’ approach of text-based multiple-choice questionnaires, which forms most of the available PROMs, have become clearer. Researchers and practitioners in the sector have, therefore, begun to seek and develop solutions. However, the research in this area remains in its infancy. Approaches so far have generally focused on developing and validating an instrument for use with a targeted population group, for example, people living with post-stroke aphasia specifically or people living with a disability more generally.

In practice, for the application of QOL as a key quality indicator in large scale system-wide quality assessment and evaluation, communication accessible versions of QOL instruments will need to be applied consistently across diverse populations. As an example, the population using long-term care services may include older people with a range of cognitive abilities, a range of communication difficulties, and people from diverse CALD backgrounds. There is a need for rigorous development and testing processes (including qualitative and quantitative approaches) to ensure the validity of communication accessible QOL instruments by the PROM research community that can be applied with confidence across multiple diverse population groups.

Positively, there are examples of promising approaches which may form the foundations for larger scale research programs to develop communication accessible QOL instruments. There is strong evidence of the successful involvement of consumers and end users, informal family carers, care professionals and stakeholders in the development of such instruments. Successful approaches have included iterative methods where steering groups have reviewed existing QOL instruments and recommended adaptations, which were then trialled and tested in the field. Other structured approaches to involving consumers in the development process include use of qualitative think-aloud, cognitive interviewing, ‘staggered reveal’ or verbal probing approaches used as part of focus groups or in-depth individual interviews. These methods have been used successfully with people with aphasia [46, 49, 58, 61], with an intellectual disability [41, 45, 57, 60] with a mental health condition [40], people with a CALD background [44] as well as older people [56] and the general population [39], providing evidence of their broad applicability across multiple populations and communication needs.

Commonly applied modifications to existing QOL instruments have included use of pictures simplification of text, formatting changes, and use of pictograms to support responses. To date, the use of technology to facilitate the completion of QOL instruments by consumers with communication challenges has been limited. Only one study by Hahn et al., 2004 [47] developed a talking computer touchscreen with cancer patients with low literacy. With the recent prolific increase in digital capability and capacity in Australia and internationally, this is an area which may hold significant promise for the future, for example through the adaption of QOL instruments for presentation on a tablet or smart phone using video, audio or animated enhancements to support understanding and completion.

To date, no communication accessible QOL instruments have undergone extensive development and validation. Of the 21 studies identified in this review focusing on 19 different instruments, few reported validity testing of new or adapted QOL instruments. Notably, only seven studies included some assessment of the reliability of the instrument in its communication accessible form such as test-re-test agreement, interobserver or intermode agreement. Detailed evaluation of the validity of these instruments is critical. Although some have been based on instruments which have been widely used and validated previously (such as the EQ-5D-5L, WHOQOL-100 and WHOQOL-BREF, or SF-36), any modifications made to the instrument would necessitate a new validation of the modified version [6, 69]. A particularly important criterion to assess is interobserver or intermode agreement for communication accessible instruments [82]. It is likely that in any large scale application in health and/or social care systems, a proportion of the population would need to access a communication accessible version in order to facilitate self-completion. It will be important to ensure there are no systematic biases in the results obtained from different versions of the same QOL instrument, to ensure QOL assessment and reporting is valid and reliable across population groups [82‐84].

This review has identified a number of studies which have reported on the development and/or validation of communication accessible versions of QOL instruments. Studies identified in this scoping review demonstrate that several methods have been successfully applied e.g. with people living with aphasia post-stroke and people living with an intellectual disability, which potentially could be adapted for application with more diverse populations. A cohesive and interdisciplinary approach to the development and validation of communication accessible versions of QOL instruments, is needed to support widespread application, thereby reducing reliance on proxy assessors and promoting self-assessment of QOL across multiple consumer groups and sectors.