Social support in people with chronic aphasia

Background & Aims : Stroke and aphasia can have a profound impact on people's social activities, and family and social relationships. This study looked at patterns of social support in people with chronic aphasia following stroke. It examined the relationship between social support and quality of life, exploring which aspects of social support (social network versus perceived social support) were most associated with health-related quality of life (HRQL). Methods & Procedures : A cross-sectional interview-based survey study was conducted. A cluster-sampling framework was used to recruit participants with chronic aphasia following stroke (> 1 year) from three different sites in the south-east of England. Measures included the Stroke and Aphasia Quality of Life Scale-39 item version (SAQOL-39), the MOS Social Support Survey (SSS), and a social network questionnaire. Descriptive statistics, correlation, t -tests, and ANOVAs were used as appropriate. Outcomes & Results : The results of those able to self-report (83 out of 95 participants, 87%) are reported here. In terms of social networks, the mode of the size of network was 4. Size of network was associated with HRQL for women only. Most participants (71%) reported they had the same amount of contact with their children following the stroke, while 64% reported they saw their friends less. Those who had the same level of contact with their family as before the stroke had the highest HRQL scores; those who saw them either less or more than before the stroke had lower HRQL. In terms of perceived social support, the SSS scores were negatively skewed with a mean (SD) of 3.69 (.95), suggesting that participants felt overall well supported. Two types of support were significantly correlated with HRQL: social companionship and informational support. Clinical implications : Therapy services for people with aphasia could consider ways to enhance social companionship and informational support as this may positively impact on HRQL. Implications could include complementing and supporting existing social networks, and facilitating access to information and social participation

Health-related quality of life in people with severe aphasia

Background: Health-related quality of life (HRQL) measures are increasingly used to help us understand the impact of disease or disability on a person's life and to measure the effectiveness of interventions. A small number of studies have looked at perceived HRQL in people with mild or moderate aphasia. They report that reduced HRQL is associated with low psychological well-being and depression, reduced activity levels and high levels of communication disability. Still, very little is known about the quality of life of people with severe aphasia. Aims: This study aimed to evaluate the HRQL of people with severe aphasia as rated by their proxy respondents. To increase our understanding of these proxy evaluations, the findings were compared with those of two other studies of HRQL in people with moderate or mild aphasia, using proxy and self-report respondents. Methods & Procedures: A questionnaire-based cross-sectional survey was carried out where proxies of people with severe aphasia reported on their HRQL. The people with severe aphasia who took part in this study were part of a larger cohort of people with aphasia who were able to self-report on their HRQL. Aphasia was assessed with the American Speech and Hearing Association Functional Assessment of Communication Skills for Adults (ASHA-FACS) and the Frenchay Aphasia Screening Test (FAST) and HRQL with the Stroke and Aphasia Quality of Life (SAQOL) scale (proxy-reported). SAQOL-39 scores were derived from the SAQOL. Results & Results: People with severe aphasia's quality of life, as measured by their proxies (n = 12), was low and more than one standard deviation below that of the standardization sample of the SAQOL. The overall mean score for the SAQOL-39 and the means for its physical and communication domains were below the 20th centile. They were also significantly lower that those of the comparison studies of self-reports (n = 83) and proxy ratings (n = 50) of people with mild or moderate aphasia (p0.003). In the comparison studies there were no significant differences between the self-report and proxy ratings of people with mild or moderate aphasia. Conclusions & Implications: This small study suggests that the HRQL of people with severe aphasia, as reported by their proxies, is severely compromised. Further research, using a wide range of methodologies, is needed in order to address the challenge of understanding better the quality of life of people with severe aphasia

Proxy and self-report agreement on the Stroke and Aphasia Quality of Life Scale-39

Background and purpose: Health related quality of life outcomes are increasingly used to measure the effectiveness of stroke interventions. People with severe aphasia after stroke may be unable to self-report on such measures, necessitating the use of proxy respondents. We explored the level of agreement between people with aphasia (PWA) and their proxies on the Stroke and Aphasia Quality of Life Scale (SAQOL-39) and whether this agreement is influenced by demographic variables and proxy levels of depression and carer strain. Methods: People with chronic aphasia (≥6 months post stroke) were recruited through the UK national charity for PWA. They were interviewed on the SAQOL-39 and their nominated proxies were interviewed on the SAQOL-39, the General Health Questionnaire and the Caregiver Strain Index. Proxy respondents had to be ≥18 years of age, see the person with aphasia at least twice a week and have no known severe mental health problems or cognitive decline. Results: 50 of 55 eligible pairs (91%) took part in the study. Proxies rated PWA as more severely affected than PWA rated themselves. The SDs of the difference scores were large and the difference was significant for three of the four SAQOL-39 domains and the overall mean (p≤0.01). However, the bias as indicated by effect sizes was small to moderate (0.2–0.5). The strength of the agreement was excellent for the overall SAQOL-39 and the physical domain (intra-class correlation coefficient ICC 0.8), good for the psychosocial and communication domains (0.7) and fair for the energy domain (0.5). Demographic variables and proxy’s mood and carer strain did not affect the level of agreement. Conclusions: For group comparisons, proxy respondents who are in frequent contact with people with chronic aphasia can reliably report on their health related quality of life, using the SAQOL-39. Although there are significant differences between PWA and proxy responses, the magnitude of this difference is small to moderate

Gender differences in health-related quality of life following total laryngectomy

Background: The impact of a total laryngectomy on an individual's life has primarily been measured from a male viewpoint reflecting the demographics of a diagnosis of laryngeal cancer. A small number of studies have looked specifically at females, but very few are comparison studies. Consequently, there is little consistent research regarding any potential gender differences. Aims: To investigate whether there are gender differences in perceptions of health-related quality of life and functional abilities following total laryngectomy. Methods & Procedures: A total of 43 participants (22 males, 21 females), who had undergone a total laryngectomy procedure at least one year previously, took part in the study. They completed The European Organisation for Research and Treatment of Cancer Core Questionnaire Version 3.0 (EORTC QLQ-C30) in conjunction with the disease-specific Head & Neck Cancer Module (QLQ-H&N35). Outcomes & Results: There were no significant differences between males and females on demographic and disease-related variables, except for the following: significantly more females lived alone and changed their employment status following surgery. Males had a significantly higher global health status/quality of life than females (p < 0.05) and significantly higher levels of physical (p = 0.01), emotional (p < 0.01), cognitive (p < 0.05) and social functioning (p < 0.05). After adjusting for differences in living arrangements and change in employment status, differences in emotional and social functioning remained significant. There was a general trend for females to have higher symptom/impairment levels and to report more treatment-related problems, but the majority of these differences were not significant. Conclusions & Implications: Following total laryngectomy, females appear to be worsely affected in aspects of quality of life than males. Emotional and social functioning are particularly vulnerable. The findings imply that rehabilitation programmes after total laryngectomy need to evaluate quality of life and address these specific areas in order to improve patient-reported long-term outcomes

Quality of life in aphasia: Greek adaptation of the stroke and aphasia quality of life scale - 39 item (SAQOL-39)

AIM: Health-related quality of life (HRQL) measures are becoming increasingly popular in evaluating health care interventions and services. The stroke and aphasia quality of life scale-39 item (SAQOL-39) is an English questionnaire that measures HRQL in people with aphasia. There is currently no measure to assess the HRQL of Greek-speaking people with aphasia. This study began the cross-cultural adaptation of the SAQOL-39 into Greek, by translating and linguistically validating the instrument. METHODS: The Mapi approach to linguistic validation was followed. The SAQOL-39 was forward translated into Greek and back-translated into English. The pilot version was produced by comparing the forward and backward translations. The resulting instrument was then reviewed by an expert professional and pilot tested with a sample of 10 people with aphasia. RESULTS: Sixty-seven percent of back-translated items matched those in the original instrument. Only 20% of the items in the consensus version needed amendments for the pilot version. The pilot testing showed that the SAQOL-39 had good accessibility (no missing data), acceptability (maximum endorsement frequencies, MEF=or>70%; 9 out of 10 participants had no difficulty) and content validity (8 participants had nothing to add to the questionnaire). CONCLUSIONS: By employing the Mapi approach to linguistic validation, a close matching between the original and the Greek version of the SAQOL-39 was ensured. The Greek SAQOL-39 is accessible and acceptable to people with aphasia. Further research is needed on the psychometric properties of the Greek SAQOL-39 and on its appropriateness as a clinical outcome measure

Measuring quality of life in people with aphasia: The Stroke Specific Quality of Life Scale

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

Visual analogue scales in stroke: what can they tell us about health-related quality of life?

Objectives: Contrasting accounts exist on whether people with stroke are able to self-report on outcomes using visual analogue scales (VASs). We explored correlations between multi-item scale-rated health-related quality of life (HRQL) and VAS-rated HRQL after stroke, and compared those with versus without aphasia. Design: Cross-sectional survey. Setting: Community dwelling stroke patients living in London. Participants: People with first stroke were recruited during their hospital stay and were assessed 3 months later. Measures: The Frenchay Aphasia Screening Test, the Stroke and Aphasia Quality of Life Scale (SAQOL-39g) and a single vertical VAS. Results: 73 people took part, 14 with aphasia. VAS scores were significantly correlated with the overall SAQOL-39g (r=0.69, p<0.01). SAQOL-39g subdomain scores were also correlated with VAS scores, with the psychosocial domain most highly correlated (r=0.67, p<0.01) and the communication least correlated (ρ=0.30, p<0.05). SAQOL-39g—VAS difference scores were higher for people with aphasia and the difference was significant (t (71)=2.02, p<0.05). Conclusions: Despite the significant correlation of the overall SAQOL-39g and the VAS-rated HRQL, subdomain results suggested that people considered mostly psychosocial aspects when rating their HRQL on a single VAS. Agreement was poorer for people with aphasia, raising issues for the use of VASs with people with aphasia

“Living with aphasia the best way I can”: a feasibility study exploring solution focused brief therapy for people with aphasia

Objective: Post-stroke aphasia can profoundly affect a person’s social and emotional well-being. This study explored the feasibility of solution focused brief therapy as an accessible intervention, and investigated its impact on participants’ psychosocial well-being. Participants and methods: Small-scale repeated measures feasibility study. Participants received between three and five therapy sessions. They were assessed on psychosocial outcome measures pre and post therapy, and took part in post-therapy in-depth qualitative interviews. Three men and two women with chronic aphasia took part; age range 40s to 70s. Results: Participants found the therapy acceptable and it was possible to adapt the approach so as to be communicatively accessible. Quantitative assessments showed encouraging trends in improved mood: pre-therapy GHQ-12 mean (SD): 4.80 (4.60), median: 6; post therapy mean (SD): 2.00 (2.55), median: 1; and improved communicative participation: pre-therapy CPIB mean (SD): 7.80 (5.76), median: 7; post therapy mean (SD): 12.20 (4.44), median: 14. Measures of social network and connectedness, however, remained stable. Themes emerging from the qualitative analysis included changes to mood, communicative participation, mobility and everyday activities. Conclusions: This small-scale study suggests solution focused brief therapy is a promising approach in helping people with aphasia build positive change in their lives