Assessing health-related quality of life in people with aphasia (original) (raw)
Assessment of quality of life in patients with aphasia
Journal of Rehman Medical Institute
Introduction: Personal satisfaction (Quality of Life; QoL) is the person's impression of their own prosperity. Aphasia is the most significant likely result of stroke and profoundly affects a patient's life, causing enthusiastic pain, sadness, and social separation, because of loss of language capacities. Objective: To document personal satisfaction in patients with aphasia. Materials & Methods: A cross sectional study was conducted at a Speech Clinic from October 2018 to March 2019 on 57 patients of aphasia to assess their quality of life. Informed consent was taken from respondents. Patients having aphasia due to any neurological cause or traumatic brain injury were included in study, while patients having childhood aphasia were excluded. Standardized questionnaire “Measuring changes in Quality of life in persons with aphasia: Is Communication Confidence a good measure?” was used to obtain information from participants through purposive sampling. Data were collected by fac...
Folia phoniatrica et logopaedica : official organ of the International Association of Logopedics and Phoniatrics (IALP), 2015
To gain an insight into speech and language therapists' perspectives on and practices in quality of life in aphasia. The International Association of Logopedics and Phoniatrics Aphasia Committee developed a survey questionnaire, which was delivered online, anonymously, through SurveyMonkey (November 2012 to April 2013) to clinicians working with people with aphasia in 16 countries across the world. A large number of speech and language therapists responded to the survey, with 19/21 questions answered by 385-579 participants. Clinicians were well informed on what constitutes quality of life and viewed it as a complex construct influenced by health, participation, in/dependence, communication, personal factors, and environmental factors. In their clinical practice, they considered quality of life as important, used informal approaches to explore it and aimed to address quality of life goals; yet, the majority did not evaluate quality of life in a systematic way. There is a need fo...
Journal of Fluency Disorders, 2010
It is becoming increasingly important that clinicians measure the health-related quality of life (HRQOL) of adults with communication disorders in order to monitor clients' progress and outcomes. This study reports on the impact of post-stroke aphasia on 30 Australian older adults' HRQOL. It also comments on the ability of the SF-36 Health Survey to measure HRQOL in this population, specifically whether the SF-36 is sensitive to the three determinants of post-stroke HRQOL -emotional, physical and social functioning deficits. Comparisons with other data are made to assist interpretation of the SF-36 scores: firstly with 75 older adults with no history of neurological conditions; and secondly with data from the 1995 National Health Survey data. The main findings are: (1) older adults with post-stroke aphasia have similar HRQOL to their peers, with two exceptions: they have significantly lower scores on the Role emotional and Mental health subscales than their peers; and (2) aphasic adults with depressive mood have significantly worse HRQOL than aphasic adults without depressive mood, with two exceptions: they have statistically similar scores on the Role emotional and Body pain subscales. Thus, the impact of aphasia on QOL is limited to the domains of emotional and mental health functioning. A different picture emerges for aphasic participants with depressive mood. Using the SF-36 as a measure of HRQOL with aphasic adults may not be advisable as it only identifies the impact of aphasia as depression. Implications of these findings for fluency disorders are briefly discussed.
Predictors of health-related quality of life (HRQL) in people with chronic aphasia
Aphasiology, 2003
Background: In recent years, quality of life measures have been used increasingly to evaluate the effectiveness of services or interventions. For people with chronic disabilities, research has focused on identifying the main predictors of their HRQL, in order to address the issue of how to meet their needs in rehabilitation in a more holistic way. Aims: This study assessed the main predictors of HRQL in people with chronic aphasia following stroke. We investigated the relationship between HRQL and various demographic and stroke-related variables and other variables that have been associated with HRQL in stroke survivors (e.g., emotional distress, daily activities, social support). Methods: A cross sectional design was adopted. A cluster sampling framework was used to recruit participants with chronic aphasia (> 1 year) from 3 different sites. Questionnaires and assessments on the different variables were administered to all participants by a Speech and Language Therapist, in an interview format. Multiple regression analysis was used to assess what were the main predictors of HRQL in people with aphasia. Results: Eighty-three out of ninety-five participants (87%) were able to self-report on all the assessments. Emotional distress, involvement in home and outdoors activities, extent of communication disability and number of comorbid conditions explained 52% of the variance in HRQL (adjusted R²=.52). Stroke type (infarct vs haemorrhage), time post onset and demographic variables (gender, ethnicity, marital status, employment status and socioeconomic status) were not significantly associated with HRQL in these participants. Conclusions: Increased distress, reduced involvement in activities, increased communication disability and comorbidity predict poorer HRQL in people with chronic aphasia after stroke. Service providers need to take these factors into account when designing intervention programmes.
Measuring Quality of Life in People with Aphasia: The Stroke Specific Quality of Life Scale
International Journal of Language & Communication Disorders, 2001
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) (Williams et al. 1999) 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.
Quality of life in aphasia: Validation of a pictorial self-rating procedure
Aphasiology, 2003
Quality of life was assessed for stroke patients with aphasia in postacute and chronic stages by means of the Aachen Life Quality Inventory (ALQI), a German adaptation of the Sickness Impact Profile (SIP). A modified written version of the ALQI was given to relatives, and a newly developed pictorial version designed to minimise language demands was given to aphasic patients. Ratings of 24 patient-relative pairs were assessed. Du/comes & Results: Overall the two vers ions were found to be highly parallel and intemally consistent, and they could be separated equally weil along physical and psychosocial dimensions. In addition to rating complaints, patients-{ere asked to score the burden caused by them; high intercorrelations between complaints and burden were found. The physical subscore was influenced by presence and degree of hemiparesis, and the psychosocial subscore by patients' mood state as rated by the relatives. Age had an impact on relati v.es' ratings of language and cognition as weil as on physical functions. Patients and rela"tives differed in rating of psychosocial and cognitive complaints. Relatives took a'more functional perspective; patient ratings were more dependent upon degree and quality of the aphasic impairment.
Quality of life in aphasia: An international perspective
2013
Katerina Hilaria, Anu Klippib, Fofi Constantinidouc, Simon Hortond, Claire Penne, Anastasia Raymerf, Sarah Wallaceg, Nada Zemvah, Linda Worrallg. a City University London, London, UK; b University of Helsinki, Helsinki, Finland; c University of Cyprus, Nicosia, Cyprus; d University of East Anglia, Norwich, UK; e University of Witwatersrand, Johannesburg, South Africa; f Old Dominion University, Norfolk, Virginia, USA; g The University of Queensland, Brisbane, Australia; h University Rehabilitation Institute, Ljubljana, Slovenia.
Brain Sciences
Background: Quality of Life (QoL) questionnaires are used to describe the impact of aphasia on stroke survivors’ life. People with aphasia (PWA) are traditionally excluded from research, potentially leading to a mismatch between the factors chosen in the tools and the realistic needs of PWA. The purpose of this review was to determine the direct involvement of PWA in the creation of QoL and aphasia impact-related questionnaires (AIR-Qs). Methods: A scoping review methodology was conducted by an expert librarian and two independent reviewers on health sciences based on the Preferred Reporting Items for Systematic Reviews and Metanalyses extension for Scoping Reviews (PRISMA-ScR) protocol, through a literature search in five databases: Medline Complete, PubMed, PsychINFO, Scopus, and Google Scholar. Search terms included ‘stroke’, ‘people with aphasia’, ‘communication’, ‘well-being’, and ‘quality of life’. Results: Of 952 results, 20 studies met the eligibility criteria. Of these, onl...
Modifying Health Outcome Measures for People With Aphasia
American Journal of Occupational Therapy, 2011
OBJECTIVE. The goal for this study was to determine methods to modify outcome measures for people with aphasia and to provide beginning support for the efficacy of these suggested modifications. METHOD. Twenty-nine community-dwelling people with aphasia participated. Modified outcome measures included the Stroke Impact Scale, the 36-item short form Medical Outcomes Study, Reintegration to Normal Living Scale, and Activity Card Sort. Participants were supported in their responses by systematically applying a hierarchy of support. An Independence Scale score was determined for each measure for each participant. RESULTS. Data from an examiner-rated Independence Scale, internal consistency of participants’ responses, correlations among subscale scores across measures, and correlations between aphasia severity and reported outcome provide evidence that people with aphasia are able to understand and respond with these supports. CONCLUSION. We provide key recommendations for making self-re...
2025
Persons with aphasia (PWA) often encounter significant challenges that hinder their ability to fully participate in or enjoy daily life, leading to a reduced quality of life. Key difficulties commonly faced by PWA include physical motor impairments, dysphagia, and depression, each contributing uniquely to the overall burden. This study explored factors that influence or predict the quality of life in PWA. A descriptive correlational research design was employed, with 65 participants selected from hospitals in Ibadan, Nigeria, using a multi-stage sampling technique. Three research questions were tested using Pearson Product Moment Correlation and Multiple Regression Analysis at a 0.05 significance level. The findings revealed significant positive correlations between quality of life and depression (r = .620, p< 0.05), physical motor impairment (r = .600, p< 0.05), and dysphagia (r = .527, p< 0.05). Together, these variables accounted for 51.7% of the variance in predicting quality of life. Each factor also showed a significant negative relative contribution: depression (β = .358, p< 0.05), motor impairment (β = .257, p< 0.05), and dysphagia (β = .310, p< 0.05). The study recommends the establishment of aphasia support forums for counseling and the integration of speech therapists, physiotherapists, and psychotherapists in early-stage management to enhance quality of life for PWA.
Audiology - Communication Research, 2014
Purpose To investigate and to compare quality of life (QOL) in fluent and non-fluent aphasics. Methods This is a prospective, quantitative, and transversal study. We included 11 stroke patients with aphasia (five non-fluent aphasics augmentative and alternative communication users and six fluent aphasics). Data was gathered from the Stroke Specific Quality of Life Scale (SS-QOL), a structure interview, and The Modified Rankin Scale. Results The non-fluent aphasics presented poorer Rankin and quality of life than the fluent aphasics. The major difference occurred in the fields of language and upper extremity function. The three most affected domains in non-fluent aphasics were language, social roles, and thinking, whereas in the fluent aphasics were personality, social roles, and thinking. All the subjects referred a worse quality of life after stroke. The domains of language and self-care were identified as the most affected after stroke. Conclusion This study demonstrated that, in ...
Psychology, 2012
Health related quality of life (HRQL) measures are increasingly used to evaluate stroke interventions. People with severe aphasia after stroke may be unable to self-report on such measures, necessitating the use of proxy respondents. This study explored the level of agreement between people with aphasia and their proxies on the Greek Stroke and Aphasia Quality of Life Scale-39 generic version (SAQOL-39g) and whether this agreement was influenced by proxy levels of depression and carer strain. Methods: Participants were people with aphasia (PWA) who were over six months post-stroke and medically stable. Proxies were nominated by the PWA and had to see them at least twice a week. PWA completed the Frenchay Aphasia Screening Test and the Greek SAQOL-39g. Proxies completed the Greek SAQOL-39g proxy version, the General Health Questionnaire-12 and the Caregiver Strain Index. Results: 23 pairs of people with aphasia and their proxies took part. Proxies rated people with aphasia as more severely affected than they rated themselves. The difference was significant for the overall scale and the physical and communication domains (p < 0.05); yet the bias introduced by these differences was small to moderate, with effect sizes ranging from 0.15 to 0.47. The strength of the agreement between people with aphasia and proxies was excellent for the overall scale and all three domains (ICC = 0.79 -0.97). The level of agreement was not associated with carer strain or emotional distress. We conclude that clinicians and researchers can use proxy ratings to evaluate the quality of life of people with severe aphasia but need to be aware of trends in proxy reporting and take these into account when interpreting data.
Aphasiology, 2016
Background: Cross-cultural adaptation of health related quality of life (HRQL) scales is useful as it allows comparisons of therapy outcomes across different countries to be drawn. : A) To adapt the English Stroke and Aphasia Quality of Life-39 item generic stroke scale (SAQOL-39g) into Dutch B) To investigate the psychometric properties (acceptability, internal consistency, test-retest reliability and construct validity) of the Dutch version (SAQOL-39NL). Methods & procedures: A) Established guidelines for cross-cultural adaptation of self-report measures were followed. B) Individuals with chronic aphasia were recruited from six centres in The Netherlands. Participants completed the SAQOL-39NL and a visual analogue scale on HRQL in an interview format with an aphasia specialist speech and language therapist. Outcomes & results: A) the cross cultural adaptation resulted in a consensus version of the SAQOL-39NL, which participants (n=13) felt was informative and of value in assessing the impact of stroke on their lives. B) The SAQOL-39NL was acceptable (no missing data; no floor or ceiling effects) to people with chronic aphasia (n=47). Internal consistency (Chronbach's alpha = 0.89 for scale; 0.84-0.91 for domains), and test-retest reliability were excellent (ICC=0.90 for scale, 0.70-0.93 for domains). Internal validity (moderate intercorrelations between domains), and convergent validity (r = 0.45) were good. Conclusions & implications: The SAQOL-39NL is a psychometrically sound measure of HRQL for Dutch speaking people with aphasia. As is common with new measures, its psychometric properties need to be evaluated further; and its appropriateness as a clinical outcome measure needs to be determined. Yet, the SAQOL-39NL is a promising new measure for use in clinical practice, audit and research.