Quality of Life in Aphasia: State of the Art

This special issue of Folia Phoniatrica and Logopedica is on quality of life (QoL) in aphasia. It includes papers on the QoL and its relation to education and linguistic performance in older people [Constantinidou et al., this issue], on an emerging intervention to improve well-being and social participation in people with aphasia [Northcott et al., this issue], and on speech and language therapists' perspectives on QoL in adult neurological practice in Denmark [Cruice et al., this issue]. It also includes the findings of the International Association of Logopedics and Phoniatrics (IALP) international survey on how speech and language therapists/pathologists in 16 countries define QoL, whether and how they incorporate it in their clinical practice, and how they measure relevant outcomes [Hilari et al., this issue]. This editorial will set the scene for this special issue. It will provide a summary of the most established conceptualizations of QoL, drawing the distinction between the World Health Organization (WHO) definition of QoL and the more narrowly focused health-related QoL. It will highlight what drives clinicians and researchers to consider and address QoL in clinical practice, and it will summarize what we know about QoL in aphasia and what we need to explore further in future research.QoL is a broad and highly subjective concept that can incorporate all aspects of an individual's life [1]. The WHO [2] defines QoL as follows: […] 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. It is a broad-ranging concept affected in complex ways by the person's physical health, psychological state, level of independence, social relationships, and their relationships to salient features of their environment.(WHOQOL Group, 1995, p. 1405)Health-related QoL (HRQL) is a related but narrower term. Rather than encompassing all aspects of life, HRQL is concerned with the impact of a health state, like aphasia, on a person's ability to lead a fulfilling life [3]. It incorporates the individual's subjective evaluation of his/her physical, mental/emotional, family and social functioning [4]. Such definitions of QoL and HRQL are clearly established in the research literature, but little has been known about how treating speech and language therapists interpret and operationalize QoL in clinical practice. Findings from an international study of aphasia therapists [Hilari et al.,this issue] illustrate that clinicians report challenges in defining a highly subjective and individual concept, but do agree on a number of domains that reflect QoL. Exploring clinicians' views is important, as some may interpret QoL more as well-being than HRQL as identified in the small-scale study of Danish aphasia clinicians [Cruice et al., this issue].QoL as a concept in health care has rapidly gained prominence over the past decade; this is in part due to the rise of the Patient-Reported Outcome Measures (PROMs) movement. Originally initiated in early 2004 by the National Institutes of Health Patient Report Outcomes Measurement Information Systems, this movement has resulted in frameworks, item banks and tools to be used in clinical practice. PROMs include QoL and HRQL measures as well as measures of other concepts that are specific aspects of QoL, such as emotional well-being, social participation, and life satisfaction. PROMs allow us to better understand and measure the impact of disease on the client's life as a whole [5] and to incorporate the client's perspective in clinical decision-making [6]. Discussing QoL with clients achieves both purposes [7]. Currently, there is a strong drive internationally to use PROMs in health care. Professional bodies across different countries identify enhanced QoL as a key aim of intervention. For example, the American Speech and Hearing Association (ASHA) scope of practice document sets as the overall objective of speech-language pathology services to optimize individuals' ability to communicate and swallow, thereby improving QoL (http://www.asha.org/docs/html/SP2007-00283.html). Similarly, in the UK, the Stroke Clinical Guidelines of the Royal College of Physicians set as key aims of stroke and aphasia rehabilitation to maximize the patient's sense of well-being and QoL [8]. In the UK, PROMs have been collected routinely by all providers of NHS-funded care since April 2009 to evaluate the quality of care for four medical procedures; it is a matter of time before this generalizes more broadly in the evaluation of health care.In 2003, Aphasiology published a special issue dedicated to QoL. The evidence on what affects QoL in aphasia was emerging at that time, and Worrall and Holland [9] in their editorial raised the need to know more about the extent of the impact of aphasia as opposed to other stroke-related impairments, and the relative effect of aphasia, i.e., the language impairment, on QoL compared to other factors, such as social relationships and activities. Today, we know a lot more about both these areas. A recent population-based study of people living in long-term care facilities in Canada (n = 66,193) compared the impact of 60 diseases and 15 conditions on caregiver-assessed preference-based HRQL. After adjusting for age, sex, and other diagnoses, aphasia exhibited the largest negative impact on preference-based HRQL, even over and beyond cancer and Alzheimer's disease [10]. In terms of the impact of the language impairment and other factors on HRQL following aphasia, a recent systematic review synthesized the evidence of 14 studies: HRQL was negatively affected by emotional distress/depression, severity of aphasia and communication disability, other medical problems, activity limitations, and aspects of social network and support [11]. Themes drawn from qualitative studies add to these findings. A meta-analysis of qualitative studies identified seven overarching themes related to living successfully with aphasia. These were: participation, meaningful relationships, support, communication, positivity, independence and autonomy, and seeing living successfully with aphasia as a journey over time [12]. These findings have important clinical implications. They suggest that to improve QoL in aphasia, interventions need to focus not just on aphasia and communication, but also on promoting emotional well-being, facilitating activities and strengthening social networks and social participation. People with aphasia report low levels of leisure and other social activities and low satisfaction with them, and reduced social contacts, particularly with friends and their wider social network [13,14,15,16]. Targeting these areas in speech and language therapy/pathology interventions is an important area in current and future research (see below and Northcott et al. [this issue]). In our continued pursuit of what influences QoL with aphasia, and what makes a difference to target in intervention, we must remember that variables quite separate from stroke and aphasia impact on QoL. As highlighted by Constantinidou et al. [this issue], QoL even in healthy aging can be affected by demographic variables such as gender and education, as well as depressive symptomatology, necessitating a holistic focus in considering people with aphasia.Over the past decade, much progress has also been made on the assessment of QoL in people with aphasia. Previously, people with aphasia were often excluded from stroke outcome studies because of their language problems, or proxy respondents were used on their behalf. We now know that people with aphasia can self-report on their QoL, and a range of valid, reliable and clinically applicable measures have specifically been developed to assess QoL and HRQL in people with aphasia [17,18,19]. For people with types of aphasia where comprehension is severely affected and reliable yes/no responses might be doubted, and a self-report is not viable, we now have some evidence to interpret proxy ratings and estimate the QoL of the aphasic subjects. Research with people with mild to moderate aphasia has shown that, using generic measures of HRQL, family members acting as proxy respondents rate the aphasic persons' QoL significantly lower than the aphasic subjects would rate themselves [20]. However, it is also possible that, applying a stroke- and aphasia-specific measure of HRQL, family members are better judges of their partner's QoL [21]. Based on such proxy ratings, individuals with severe aphasia have been shown to have significantly lower HRQL compared to their general aphasic peers [22]. When considering the general proxy literature, it is clear that multiple factors influence the agreement between proxies and patients, and the ideal candidate to report on QoL is the person him/herself. This concords with the person-centered approach in speech-language therapy practice, and suggests the need to develop differentiated approaches to measuring QoL/HRQL in persons with more severe difficulties, as well as using personalized methods such as Talking Mats™ [23].Whilst there is an increasing interest in QoL assessment, we need to address how QoL and HRQL measures are used in practice and research. Evidence from practice scoping studies demonstrates that QoL and HRQL measures are not systematically incorporated into routine clinical practice, nor are measures of the factors that predict QoL, such as emotional health and social participation [24,25,26]. Systematic reviews of aphasia interventions, such as the 2010 review of communication partner training [27] and the 2012 Cochrane review of aphasia therapy [28], highlight that QoL is rarely included as an outcome measure in aphasia studies. This issue is investigated further in this special issue, and in particular some of the barriers that exist are discussed [Cruice et al.,this issue; Hilari et al.,this issue]. Two major barriers are: (1) the lack of theoretical, practical and experiential knowledge on the part of the aphasia clinician, and (2) the lack of translated QoL instruments, with clear training implications and assessment development or adaptation for the practicing workforce globally [Cruice et al., this issue; Hilari et al., this issue]. Despite developing ways to assess QoL/HRQL in people with aphasia and understanding better what factors affect QoL/HRQL in people with aphasia, we are still a long way of knowing which interventions produce greater QoL/HRQL gains for them. In terms of principles guiding intervention, Hilari and Cruice [7] advocate a QoL approach whereby assessment and therapy are structured from the client's perspective after having determined the client's desire for therapy, priorities, standards, and personal aspirations in initial QoL interviews and after having selected areas for further assessment based on that. Such an approach is not an alternative or addition to typical approaches such as neuropsychological or functional communication; rather, it is an overarching philosophy that can encompass different approaches and methods depending on what works best for each client at different stages of recovery and life after stroke and aphasia. Additionally, integrating an adult learning approach to treatment can be beneficial. Such an approach can promote QoL by renegotiating the learner's attitudes and behaviors related to communication to create a more inclusive and integrated understanding of his or her experience of living with aphasia. This can be achieved by (a) acknowledging the previous learning of spouses and partners with aphasia; (b) using reflective questions; (c) collaborating with couples to set goals and design the program agenda; (d) explicitly exploring couples' learning styles and diversity; (e) adjusting to the ‘rhythms' of learning; (f) building on the unexpected; (g) using individualized aphasia-friendly and/or written materials; (h) providing opportunities for practice and coaching support, and (i) using self-evaluation [29]. By making the learning process explicit, this approach can also promote lifelong learning related to communication. Sorin-Peters and colleagues [29,30] found that incorporating such an approach in communication partner training led to consistently better and broader outcomes that include not just positive changes in communication, but also improvements in emotions and marital relationships.Regarding specific therapy approaches and interventions to improve QoL and HRQL, there is promising evidence for group therapy in terms of psychosocial benefits [31,32] and improved social participation and social connection compared with controls [33]; for impairment-based therapy for word-finding difficulties, when targeted around an individual's interests [34]; for intensive comprehensive aphasia programs [35], as well as for models of community service provision [36,37,38,39]. Yet, further research in these areas with larger sample sizes and appropriate control groups will increase our confidence in these findings. Encouragingly, a number of randomized controlled trials of intensive aphasia therapy are currently under way around the world, incorporating generic [40] and stroke- and aphasia-specific HRQL outcome measures [41,42]. Still, there is a pressing need for interventions that aim to improve HRQL for people with aphasia by specifically targeting factors that affect HRQL, such as depression, communication disability, engagement in activities, and diminishing social networks, to be systematically evaluated. The Communication and Low Mood (CALM) randomized controlled trial of behavior therapy in aphasia [43] is an excellent example of such research, albeit delivered outside the speech-language therapy profession, and arguably could benefit from interdisciplinary engagement in future iterations. Exploration of approaches newly applied to aphasia in small-scale studies will also move the field forward. The feasibility study exploring solution-focused brief therapy as an intervention for 5 people with chronic aphasia by Northcott et al. [this issue] is an example of such recent developments, and suggests encouraging trends in improved mood and communicative participation.At the same time as developing the evidence base for effective interventions to improve QoL, we need to determine economic benefits, alongside clinical and person-reported benefits. Cost-effectiveness in aphasia treatment is a relatively recent development, and typically required for new randomized controlled trials. For example, the CALM study reports a positive outcome with a specified cost per point reduction on an emotional health/depression measure [44]. Most cost-effectiveness analyses are prospective; however, a recent paper undertook a retrospective cost-effectiveness analysis of published single-subject experimental research, analyzed according to language outcomes [45]. Within the field, we have a single study that evaluates outcome against HRQL, the economic evaluation of a voluntary sector service [46], and more studies specific to interventions are urgently needed to demonstrate value to client and society.Finally, the future direction of aphasia interventions needs to be at minimum informed by, and at best driven by, the priorities of people who live with aphasia (individuals, families, friends, local communities) and ideally by consensus amongst service recipients, clinicians, researchers, commissioners/funders, and policy makers. Wallace et al. [47] lead this new line of enquiry into core outcome sets proposing an inclusive consensus-based method for generating agreed priorities for research outcome measurement in aphasia. Such organized consensus approaches are increasingly popular; for example, Pollock et al. [48] identified the top ten priorities in stroke research, which include: identifying the best ways of recovering from aphasia; how to help people and families cope with speech problems; helping people to come to terms with the long-term consequences of stroke, and improving confidence after stroke. Agreeing on a focus and standardizing QoL/HRQL or well-being measures to be routinely used in clinical practice with people with aphasia will strengthen the field immeasurably.

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