Measuring Quality of Life in People With Aphasia the Stroke Specific Quality of Life Scale

Abstract

Assessing health related quality of life (HRQOL) in people with communication disabilities is a challenge in health related research. Materials used to assess HRQOL are often linguistically complex and their mode of administration usually does not facilitate people with communication disabilities to give their experiences. We are currently running a medium scale study (80 participants) which aims to explore the HRQOL of people with long-term aphasia and to assess the psychometric properties and the acceptability of the Stroke Specific Quality of Life Scale (SS-QOL) ) as a single measure for the assessment of HRQOL in this population. Here the initial stages of modifying the SS-QOL for use with people with aphasia will be presented. We will concentrate on the process of making the scale communicatively accessible to people with aphasia and increasing its content validity with this population group. IntroductionIn recent years there has been a trend towards incorporating HRQOL measures in patient outcome research. The purpose of this is to better understand the impact of disease on the patient's life as a whole (Patrick and Erickson 1993), to evaluate the efficacy of different therapeutic interventions and service provisions (de Haan et al. 1993); and to incorporate the patient's perspective in clinical decision making (Wenger et al. 1984, Mayou andBryant 1993).In the field of stroke, however, assessing HRQOL is a challenge as some people after stroke suffer from speech and language and/or cognitive difficulties. They have difficulty completing self-report assessments and questionnaires. As a result, although there is a considerable amount of research investigating emotional outcomes and HRQOL in stroke survivors we still have limited information for the vulnerable group of people with aphasia. Sometimes they are excluded from the studies (e.g. Duncan et al. 1997, Jonkman et al. 1998, Clarke et al. 1999. In the studies that do include people with aphasia (e.g. Foster and Young 1996, King 1996, Bethoux et al. 1999, Lofgren et al. 1999 often the validity of the assessments is doubtful. People with aphasia would have had difficulty understanding some of the items of the questionnaires used and expressing their responses. They would require at least some modification of the testing materials and special skills on behalf of the interviewer in order to give their experience of stroke.To overcome some of these difficulties we are developing an interview-administered version of the Stroke Specific Quality of Life Scale (SS-QOL) for people with mild to moderate receptive aphasia. We chose the SS-QOL for the following reasons. First, it is a patient derived measure: to establish domain and item content validity the developers held focused interviews with stroke survivors to identify the domains most affected by their stroke . Second, it is designed specifically for use in clinical trials: this makes it a relatively easy and quick to administer measure.Developing an aphasia-adapted version of the SS-QOL is a long process, w...

The impact of stroke: are people with aphasia different to those without?

“…Established methods were adopted 15,16,17 : large font (minimum 14), key words in bold, few items per page, and where appropriate pre-prepared pictures were used i .…”

The assessment for living with aphasia: Reliability and construct validity

“…There is a growing literature describing methods of increasing communicative access for people with aphasia (e.g., Alarcon & Rogers, 2010;Kagan, Black, Duchan, Simmons-Mackie, & Square, 2001;Simmons-Mackie, Kagan, O ' Neill Christie, Huijbregts, McEwen, & Willems, 2007). For example, characteristics of aphasia-friendly printed materials and supports have been described (e.g., Hilari & Byng, 2001;Kagan, 1998;Rose, Worrall, & McKenna, 2003;Worrall, Rose, Howe, Brennan, Egan, Oxenham, et al, 2005). The ALA was designed with these principles in mind and in keeping with extensive experience in Supported Conversation for Adults with Aphasia (SCA TM ), a method designed to facilitate communication with people with aphasia (Kagan, 1998).…”

Quality of life in aphasia: differences between fluent and non-fluent aphasic Augmentative and Alternative Communication users

“…In the literature, however, not many studies about aphasics QOL can be found, mainly due to difficulties on the part of the interviewers in dealing with linguistic-cognitive impairments, and also difficulties on the part of the patients in understanding and expressing themselves in a satisfactory way to convey their actual QOL (3,4,14,15) . For this reason, some authors (3,14) point out the need to adapt the QOL questionnaires to favor the participation of the aphasics, by, for example, simplifying the questions and using pictures.…”

“…For this reason, some authors (3,14) point out the need to adapt the QOL questionnaires to favor the participation of the aphasics, by, for example, simplifying the questions and using pictures.…”