RESUMO
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.
RESUMO
OBJECTIVES: This study aimed to examine how patients perceive shared decision-making regarding CT scan referral and use of the five Choosing Wisely questions with their general practitioner (GP). DESIGN: This is a qualitative exploratory study using semistructured interviews. SETTING: This study was conducted in a large metropolitan public healthcare organisation in urban Australia. PARTICIPANTS: Following purposive sampling, 20 patients and 2 carers participated. Patient participants aged 18 years or older were eligible if they were attending the healthcare organisation for a CT scan and referred by their GP. Carers/family were eligible to participate when they were in the role of an unpaid carer and were aged 18 years or older. Participants were required to speak English sufficiently to provide informed consent. Participants with cognitive impairment were excluded. FINDINGS: Eighteen interviews were conducted with the patient only. Two interviews were conducted with the patient and the patient's carer. Fourteen participants were female. Five themes resulted from the thematic analysis: (1) needing to know, (2) questioning doctors is not necessary, (3) discussing scans is not required, (4) uncertainty about questioning and (5) valuing the Choosing Wisely questions. Participants reported that they presented to their GP with a health problem that they needed to understand and address. Participants accepted their GPs decision to prescribe a CT scan to identify the nature of their problem. They reported ambivalence about engaging in shared decision-making with their doctor, although many participants reported valuing the Choosing Wisely questions. CONCLUSIONS: Shared decision-making is an important principle underpinning Choosing Wisely. Practice implementation requires understanding patients' motivations to engage in shared decision-making with a focus on attitudes, beliefs, knowledge and emotions. Systems-level support and education for healthcare practitioners in effective communication is important. However, this needs to emphasise communication with patients who have varying degrees of motivation to engage in shared decision-making and Choosing Wisely.
