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

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

How do healthcare professionals interview patients to assess suicide risk?

Background: There is little evidence on how professionals communicate to assess suicide risk. This study analysed how professionals interview patients about suicidal ideation in clinical practice. Methods: Three hundred nineteen video-recorded outpatient visits in U.K. secondary mental health care were screened. 83 exchanges about suicidal ideation were identified in 77 visits. A convenience sample of 6 cases in 46 primary care visits was also analysed. Depressive symptoms were assessed. Questions and responses were qualitatively analysed using conversation analysis. χ 2 tested whether questions were influenced by severity of depression or influenced patients’ responses. Results: A gateway closed question was always asked inviting a yes/no response. 75% of questions were negatively phrased, communicating an expectation of no suicidal ideation, e.g., “No thoughts of harming yourself?”. 25% were positively phrased, communicating an expectation of suicidal ideation, e.g., “Do you feel life is not worth living?”. Comparing these two question types, patients were significantly more likely to say they were not suicidal when the question was negatively phrased but were not more likely to say they were suicidal when positively phrased (χ 2 = 7.2, df = 1, p = 0.016). 25% patients responded with a narrative rather than a yes/no, conveying ambivalence. Here, psychiatrists tended to pursue a yes/no response. When the patient responded no to the gateway question, the psychiatrist moved on to the next topic. A similar pattern was identified in primary care. Conclusions: Psychiatrists tend to ask patients to confirm they are not suicidal using negative questions. Negatively phrased questions bias patients’ responses towards reporting no suicidal ideation

Integration and Continuity of Primary Care: Polyclinics and Alternatives, a Patient-Centred Analysis of How Organisation Constrains Care Coordination

Background An ageing population, increasingly specialised of clinical services and diverse healthcare provider ownership make the coordination and continuity of complex care increasingly problematic. The way in which the provision of complex healthcare is coordinated produces – or fails to – six forms of continuity of care (cross-sectional, longitudinal, flexible, access, informational, relational). Care coordination is accomplished by a combination of activities by: patients themselves; provider organisations; care networks coordinating the separate provider organisations; and overall health system governance. This research examines how far organisational integration might promote care coordination at the clinical level. Objectives To examine: 1. What differences the organisational integration of primary care makes, compared with network governance, to horizontal and vertical coordination of care. 2. What difference provider ownership (corporate, partnership, public) makes. 3. How much scope either structure allows for managerial discretion and ‘performance’. 4. Differences between networked and hierarchical governance regarding the continuity and integration of primary care. 5. The implications of the above for managerial practice in primary care. Methods Multiple-methods design combining: 1. Assembly of an analytic framework by non-systematic review. 2. Framework analysis of patients’ experiences of the continuities of care. 3. Systematic comparison of organisational case studies made in the same study sites. 4. A cross-country comparison of care coordination mechanisms found in our NHS study sites with those in publicly owned and managed Swedish polyclinics. 5. Analysis and synthesis of data using an ‘inside-out’ analytic strategy. Study sites included professional partnership, corporate and publicly owned and managed primary care providers, and different configurations of organisational integration or separation of community health services, mental health services, social services and acute in-patient care. Results Starting from data about patients' experiences of the coordination or under-coordination of care we identified: 1. Five care coordination mechanisms present in both the integrated organisations and the care networks. 2. Four main obstacles to care coordination within the integrated organisations, of which two were also present in the care networks. 3. Seven main obstacles to care coordination that were specific to the care networks. 4. Nine care coordination mechanisms present in the integrated organisations. Taking everything into consideration, integrated organisations appeared more favourable to producing continuities of care than were care networks. Network structures demonstrated more flexibility in adding services for small care groups temporarily, but the expansion of integrated organisations had advantages when adding new services on a longer term and larger scale. Ownership differences affected the range of services to which patients had direct access; primary care doctors’ managerial responsibilities (relevant to care coordination because of its impact on GP workload); and the scope for doctors to develop special interests. We found little difference between integrated organisations and care networks in terms of managerial discretion and performance. Conclusions On balance, an integrated organisation seems more likely to favour the development of care coordination, and therefore continuities of care, than a system of care networks. At least four different variants of ownership and management of organisationally integrated primary care providers are practicable in NHS-like settings

Treatment resistant depression in primary care: Co-constructing difficult encounters

Many patients with depression do not recover despite medication or therapy. Individuals with treatment resistant depression often have co-morbid anxiety, personality difficulties and drug or alcohol misuse and have been characterised as difficult, heartsink or problem personalities by general practitioners. Yet critical studies of interaction in medical settings suggest that the context may have a role in constructing the patient. A total of 12 audio-recorded routine consultations were analysed following guidelines for qualitative analysis of medical discourse. The interpretation focused on ways in which the context and structure of primary care consultations in a UK setting construct difficult encounters, which may lead to patients with treatment resistant depression being seen as difficult to manage in various ways. Three overarching observations were that presentation of multiple problems in multiple domains clash with the consultation format; that patients? atypically high level of activity in a time-limited setting prevents patient-centred work; that the question and answer format restricts multifaceted discussions of social and emotional problems, preventing shared understandings emerging. However, although interactions appear uneasy, they are repaired and may be moderately palliative. Suggestions are made for re-orienting general practitioner work with treatment resistant depression towards long-term goal setting outside of the traditional consultation structure in order to develop shared understandings

Predictors of health-related quality of life (HRQL) in people with chronic aphasia

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 health-related quality of life (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 three 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: Of 95 participants, 83 (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 R 2 = .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

Integrating the voluntary sector in personalised care: mixed methods study of the outcomes from wellbeing co-ordination for adults with complex needs

PurposeThis integrated care study seeks to highlight how voluntary sector “wellbeing co-ordinators” co-located in a horizontally and vertically integrated, multidisciplinary community hub within one locality of an Integrated Care Organisation contribute to complex, person-centred, co-ordinated care.Design/methodology/approachThis is a naturalistic, mixed method and mixed data study. It is complementing a before-and-after study with a sub-group analysis of people receiving input from the wider hub (including Wellbeing Co-ordination and Enhanced Intermediate Care), qualitative case studies, interviews, and observations co-produced with embedded researchers-in-residence.FindingsThe cross-case analysis uses trajectories and outcome patterns across six client groups to illustrate the bio-psycho-social complexity of each group across the life course, corresponding with the range of inputs offered by the hub.Research limitations/implicationsTo consider the effectiveness and mechanisms of complex system-wide interventions operating at horizontal and vertical interfaces and researching this applying co-produced, embedded, naturalistic and mixed methods approaches.Practical implicationsHow a bio-psycho-social approach by a wellbeing co-ordinator can contribute to improved person reported outcomes from a range of preventive, rehabilitation, palliative care and bereavement services in the community.Social implicationsTo combine knowledge about individuals held in the community to align the respective inputs, and expectations about outcomes while considering networked pathways based on functional status, above diagnostic pathways, and along a life-continuum.Originality/valueThe hub as a whole seems to (1) Enhance engagement through relationship, trust and activation, (2) Exchanging knowledge to co-create a shared bio-psycho-social understanding of each individual’s situation and goals, (3) Personalising care planning by utilising the range of available resources to ensure needs are met, and (4) Enhancing co-ordination and ongoing care through multi-disciplinary working between practitioners, across teams and sectors.</jats:sec

Learning from people with long-term conditions: new insights for governance in primary health care

Internationally, system-wide changes to the structures and systems governing health care aim to improve outcomes for patients, quality of care and access to services. The introduction of top-down centrally driven solutions to governance of health care, at the same time as increasing policy emphasis on greater ‘bottom up’ patient and public involvement in all aspects of health care, has set up complex tensions for policy implementation and health care practice. This paper explores the interplay of these agendas in the context of changes in primary health care services provided by the National Health Service (NHS) in England. Specifically, it looks at an example of service user involvement in a study (the PEGI study) of professional response to changes in the governance and incentives in the care of people with long-term conditions. This qualitative study was conducted in three Primary Care Trust sites in England. Service users influenced and guided the study throughout. In-depth interviews with 56 health and social care professionals engaged in the development of local policies and the delivery of care for people with complex long-term illness drew on vignettes developed by 32 members from three Service User Reference Groups (SURG). Themes generated by the cross case analysis were validated through these SURG groups. The findings presented here focus on four themes about risk and comparison of professionals’/service users’ perspectives of the issues: managing risks/consistent support, the risks of letting go/feeling in control, professionalism/helping people to help themselves, and managing expectations/professionals losing out. Service user involvement added value by: validating understandings of governance, framing debates to focus on what matters at the point of care, and enabling perspective sharing and interaction. We suggest that more collaborative forms of governance in health care, that take account of service user perspectives and enable interaction with professional groups, could help to validate processes of quality assurance and provide motivation for continuous quality improvement. We offer a model for ‘opening up’ collaborative projects to evaluation and appraisal and a process for critical reflection of the interrelationships between the PEGI study context, researcher issues, methods/approach and outcomes/impact of service user involvement