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Objective The aim of this study was to examine the level of agreement between self-and proxy-reporting of health-related quality of life (HRQoL) in children (under 18 years of age) using generic preference-based measures. Methods A systematic review of primary studies that reported agreement statistics for self and proxy assessments of overall and/or dimension-level paediatric HRQoL using generic preference-based measures was conducted. Where available, data on intraclass correlation coefficients (ICCs) were extracted to summarise overall agreement levels, and Cohen's kappa was used to describe agreement across domains. A meta-analysis was also performed to synthesise studies and estimate the level of agreement between self-and proxy-reported paediatric overall and domain-level HRQoL. Results Of the 30 studies included, 25 reported inter-rater agreement for overall utilities, while 17 reported domain-specific agreement. Seven generic preference-based measures were identified as having been applied: Health Utilities Index (HUI) Mark 2 and 3, EQ-5D measures, Child Health Utility 9 Dimensions (CHU9D), and the Quality of Well-Being (QWB) scale. A total of 45 dyad samples were included, with a total pooled sample of 3084 children and 3300 proxies. Most of the identified studies reported a poor inter-rater agreement for the overall HRQoL using ICCs. In contrast to more observable HRQoL domains relating to physical health and functioning, the inter-rater agreement was low for psychosocial-related domains, e.g., 'emotion' and 'cognition' attributes of both HUI2 and HUI3, and 'feeling worried, sad, or unhappy' and 'having pain or discomfort' domains of the EQ-5D. Parents demonstrated a higher level of agreement with children relative to health professionals. Child self-and proxy-reports of HRQoL showed lower agreement in cancer-related studies than in non-cancerrelated studies. The overall ICC from the meta-analysis was estimated to be 0.49 (95% confidence interval 0.34-0.61) with poor inter-rater agreement. Conclusion This study provides evidence from a systematic review of studies reporting dyad assessments to demonstrate the discrepancies in inter-rater agreement between child and proxy reporting of overall and domain-level paediatric HRQoL using generic preference-based measures. Further research to drive the inclusion of children in self-reporting their own HRQoL wherever possible and limiting the reliance on proxy reporting of children's HRQoL is warranted.

Background Local governments play an important role in supporting people with intellectual disability to feel included in their local communities and local‐level inclusion is an increasing priority for councils and local authorities in many countries. However, people with intellectual disability themselves have had little involvement in setting the priorities for initiatives and activities in their local communities. In the project, we wanted to know what kinds of initiatives were being implemented and what people with intellectual disability felt was important about these activities in their local communities. In this paper, we explore how the involvement of people with intellectual disability has shaped the outcomes of the review and implications for research and practice. Methods We completed a review of local‐level inclusion‐building initiatives. We translated the results into accessible formats and our inclusive research team used these to involve six people with intellectual disability in New South Wales, Australia, in exploring their priorities around kinds of activities, quality and depth of inclusion in their local communities. Findings The data showed that people wanted to share their deep, rich insights and questions about the things that drive inclusion and exclusion—not only their views about the effectiveness of particular kinds of activities. Conclusions Implications for future policy and practice are that consultation should not be framed narrowly, but invite people with intellectual disability into conversation about change‐making at community and societal levels, as well as seeking their views on specific initiatives and activities. This opens up new opportunities to respond to the priorities of people with intellectual disability in local community‐building.

Background Microenterprises are very small businesses requiring little capital and can be an employment pathway for people with intellectual disabilities. This systematic review aims to identify the facilitators, barriers and outcomes from microenterprise. Method Web of Science, Scopus, EconLit, PsycINFO and ProQuest were searched to identify peer‐reviewed studies on microenterprises owned by people with intellectual disability published up to and including 1 October 2019. Results A total of 1080 papers were independently screened by two reviewers. Six papers met the inclusion criteria. Barriers included lack of access to business expertise and resources, and the tension between growing microenterprises and maintaining eligibility for welfare payments. Formal and informal supports were key facilitators. Outcomes experienced included additional income, skills development, increased confidence and engagement in meaningful activities. Conclusion Additional research is required to develop an evidence base which may support investment in this employment pathway, making microenterprise more accessible to people with intellectual disabilities.

Purpose The EQ-5D-5L is a preference-based instrument for measuring and valuing health-related quality of life (HRQoL). The EQ-5D-5L has been used extensively in economic evaluation, including in aged care. However, older adults’ understanding of the EQ-5D-5L has not been comprehensively investigated to date. This research aimed to assess older adults’ understanding of the EQ-5D-5L using a think-aloud protocol with two cognition groups: no cognitive impairment and mild/moderate cognitive impairment. Methods Participants’ cognition was assessed using the Standardised Mini-Mental State Examination (SMMSE). Face-to face interviews were conducted with concurrent and retrospective think-aloud encouraged through verbal probing. Audio recordings were transcribed, and qualitative analysis, informed by the Tourangeau four-stage Response Model (comprehension, retrieval, decision process, response process) was conducted in NVivo. Results In total, 46 older adults (age 65 +) were recruited from 10 residential care facilities across South Australia (n = 25 no cognitive impairment, n = 21 mild/moderate cognitive impairment). Comprehension, retrieval, judgement and response mapping issues were common across all cognition levels and EQ-5D-5L dimensions. The two dimensions resulting in the most response issues were usual activities and personal care. Conclusion Older adults may bring a different understanding to the EQ-5D-5L descriptive system than that expected given testing with general population samples. Dimension descriptors that are more relevant to this population may facilitate responses that better align with the underlying EQ-5D-5L concept model.

Quality of life (QoL) is an important outcome in aged care, but self-report is not always possible due to the high prevalence of cognitive impairment in older aged care residents. This study aims to assess the impact of family member proxy perspective (proxy-proxy or proxy-person) on interrater agreement with resident self-report by different cognition levels. The influence of proxy perspective and cognition level is a significant gap in the extant literature which this study seeks to address. A cross-sectional study was undertaken with residents classified into cognition subgroups according to the Mini Mental State Examination. Residents completed the self-report EQ-5D-5L, a well-established generic measure of health-related quality of life (HRQoL). Family member proxies completed EQ-5D-5L proxy version 1 (proxy-proxy perspective, where the proxy responds based on their own opinions) and proxy version 2 (proxy-person perspective, where the proxy responds as they believe the person would). Interrater agreement was assessed using the concordance correlation coefficient (CCC) for utility scores and the weighted kappa for dimension-level responses. Sixty-three residents (n = 22 no cognitive impairment, n = 27 mild impairment, and n = 14 moderate impairment) and proxies participated. EQ-5D-5L utility scores were lower for proxies compared with residents (self-report = 0.522, proxy-proxy = 0.299, and proxy-person = 0.408). Interrater agreement with self-report was higher for proxy-person (CCC = 0.691) than for proxy-proxy (CCC = 0.609). Agreement at the dimension level was higher for more easily observable dimensions, such as mobility, compared to less observable dimensions, such as anxiety/depression. Resident self-reported and proxy family member-reported HRQoL assessments, using the EQ-5D-5L, are different but may be more closely aligned when the proxy is specifically guided to respond from the person’s perspective. Further research is needed to address the impact of divergences in self-report and proxy-report ratings of HRQoL for quality assessment and economic evaluation in aged care.

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Purpose Increasingly there are calls to routinely assess the health-related quality of life (HRQoL) of older people receiving aged care services, however the high prevalence of dementia and cognitive impairment remains a challenge to implementation. Eye-tracking technology facilitates detailed assessment of engagement and comprehension of visual stimuli, and may be useful in flagging individuals and populations who cannot reliably self-complete HRQoL instruments. The aim of this study was to apply eye-tracking technology to provide insights into self-reporting of HRQoL among older people in residential care with and without cognitive impairment. Methods Residents (n = 41), recruited based on one of three cognition subgroups (no, mild, or moderate cognitive impairment), completed the EQ-5D-5L on a computer with eye tracking technology embedded. Number and length of fixations (i.e., eye gaze in seconds) for key components of the EQ-5D-5L descriptive system were calculated. Results For all dimensions, participants with no cognitive impairment fixated for longer on the Area of Interest (AOI) for the response option they finally chose, relative to those with mild or moderate cognitive impairment. Participants with cognitive impairment followed similar fixation patterns to those without. There was some evidence that participants with cognitive impairment took longer to complete and spent relatively less time attending to the relevant AOIs, but these differences did not reach statistical significance generally. Conclusions This exploratory study applying eye tracking technology provides novel insights and evidence of the feasibility of self-reported HRQoL assessments in older people in aged care settings where cognitive impairment and dementia are highly prevalent.