Measuring Healthcare Experiences Among People With Intellectual Disability: A Rapid Evidence Synthesis of Tools And Methods.

OBJECTIVES: Patient-reported experience measures (PREMs) collect essential data for service and system-wide quality improvement and performance monitoring toward value-based care. However, the experiences of people with intellectual disability, who have high healthcare utilization couple with poorer outcomes, are often omitted from system-wide PREMs and service-wide PREMs data. The use of PREMs instruments for data collection among people with intellectual disability has not been explored. This review aimed to identify and synthesize measurement tools and approaches that have been used to gather patient-reported experience data from people with intellectual disability. METHODS: Rapid evidence assessment was used, in which comprehensive search strategies were applied to electronic databases and gray literature. Narrative synthesis was used with the included articles to address the review aim. RESULTS: A total of 48 documents were included; 26 peer-reviewed journal articles and 22 articles from gray literature. Patient-reported experiences have been gathered from people with intellectual disabilities in relation to specific services or encounters, predominantly using qualitative methods. To date, there is an absence of targeted service- or system-wide surveys. Existing clinic- and condition-specific instruments provide insight for broader application. CONCLUSIONS: Patient experience assessment among people with intellectual disability requires consideration of (1) how individuals are identified and approached, (2) the content, design and structure of measurement instruments, and (3) the process by which data are collected, and (4) how it may be applied to create change. Despite the collection of patient experience data from people with intellectual disability, there is little research available about how this information is later used to support health service improvement. Applying PREMs for quality improvement is critical to realize the improvements to healthcare provision required for people with intellectual disability toward equitable care quality.

Approaches for enhancing patient-reported experience measurement with ethnically diverse communities: a rapid evidence synthesis.

BACKGROUND: Patient-reported experience measures (PREMs) are used to drive and evaluate unit and organisational-level healthcare improvement, but also at a population level, these measures can be key indicators of healthcare quality. Current evidence indicates that ethnically diverse communities frequently experience poorer care quality and outcomes, with PREMs data required from this population to direct service improvement efforts. This review synthesises evidence of the methods and approaches used to promote participation in PREMs among ethnically diverse populations. METHODS: A rapid evidence appraisal (REA) methodology was utilised to identify the disparate literature on this topic. A search strategy was developed and applied to three major electronic databases in July 2022 (Medline; PsycINFO and CINAHL), in addition to websites of health agencies in Organisation for Economic Co-operation and Development countries via grey literature searches. A narrative evidence synthesis was undertaken to address the review question. RESULTS: The review resulted in 97 included studies, comprised 86 articles from electronic database searches and 11 articles from the grey literature. Data extraction and synthesis identified five strategies used in PREM instruments and processes to enhance participation among ethnically diverse communities. Strategies applied sought to better inform communities about PREMs, to create accessible PREMs instruments, to support PREMs completion and to include culturally relevant topics. Several methods were used, predominantly drawing upon bicultural workers, translation, and community outreach to access and support communities at one or more stages of design or administration of PREMs. Limited evidence was available of the effectiveness of the identified methods and strategies. PREMs topics of trust, cultural responsiveness, care navigation and coordination were identified as pertinent to and frequently explored with this population. CONCLUSIONS: The findings provide a basis for a maturity model that may guide change to increase participation of ethnically diverse communities in PREMs. In the short-medium term, health systems and services must be able to recognise and respond to cultural and linguistic diversity in the population when applying existing PREMs. In the longer-term, by working in collaboration with ethnically diverse communities, systems and services may co-create adapted or novel PREMs that tackle the factors that currently inhibit uptake and completion among ethnically diverse communities.

Advances of Melatonin-Based Therapies in the Treatment of Disturbed Sleep and Mood.

Melatonin and melatonin agonists offer novel treatments for sleep and mood disorders, particularly where circadian misalignment is also present. The therapies offer both phase-shifting and sleep-promoting effects and have shown potential to treat advanced and delayed sleep-wake phase disorder, non-24-h sleep-wake cycle, jetlag, shift work disorder, insomnia, seasonal affective disorder and major depressive disorder.

Art after stroke: the qualitative experience of community dwelling stroke survivors in a group art programme.

PURPOSE: This study aimed to qualitatively explore the experience of community dwelling stroke survivors' participation in an arts health group programme and possible health benefits to quality of life (QOL) and wellbeing. METHOD: Sixteen participants were conveniently sampled to participate in two group art programmes, both held weekly over a period of 8 weeks. Qualitative data were collected through two focus groups (n = 9) and individual interviews (n = 11). Qualitative analysis of the data was undertaken, using a grounded theory approach incorporating constant comparison. RESULTS: Age ranged from 43 to 81 years. Four themes emerged including: experience of stroke, benefit of art, benefit for self and benefit of group experience. Participants experienced improved confidence, self-efficacy, QOL and community participation through involvement in an arts health programme. CONCLUSIONS: The implementation of an arts health programme after stroke made a substantial impact on well-being and QOL. Results from this study are promising and this is a model that warrants rigorous investigation regarding the impact of art on QOL and wellbeing. This study also highlighted the need for community resources to address community re-integration and service provision in the form of age appropriate, activity-based groups for stroke survivors.

Community-dwelling stroke survivors: function is not the whole story with quality of life.

OBJECTIVE: To compare function and quality of life in community-dwelling stroke survivors at 1, 3, and 5 years after stroke. DESIGN: A community-based, cross-sectional study of 3 retrospective cohorts. SETTING: Community-dwelling stroke survivors in Australia. PARTICIPANTS: The 3 cohorts comprised 30 participants each at 1, 3, and 5 years poststroke discharge from a tertiary referral hospital. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Stroke severity, comorbidity, medications used, and demographic information were recorded. Poststroke function was assessed using the Modified Rankin Scale, Mini-Mental State Examination, Stroke Impact Scale, and Multidimensional Scale of Perceived Social Support. RESULTS: This cross-sectional study provides insights into trends in stroke survivors over time. A high proportion of stroke survivors use community services, even those who are independent with activities of daily living. Although there was little attrition in medication use over time except for warfarin, this was from a baseline of suboptimal compliance and adherence with stroke preventive therapies. Stroke survivors report high levels of perceived social support; however, emotional well-being was low overall. The data suggest that those who are independent at 1 year tend to remain independent, although this was an extrapolation from serial cross-sections and needs to be explored in a longitudinal study. CONCLUSIONS: Stroke survivors' function does not change significantly over time. A high proportion of survivors require community services. The development of needs-related effective long-term service delivery models is required.