The published literature addressing the nature of patient- and family-centred care (PFCC) among young adults (16-25 years old) living with chronic disease and their family members is diverse. The aim of this systematic review was to collect and interpretatively synthesise this literature to generate a conceptual understanding of PFCC in this age group. From an initial pool of 10,615 papers, 51 were systematically identified as relevant to the research question and appraised using the Critical Appraisal Skills Programme tools. A total of 24 papers passed the quality appraisal and proceeded to a qualitative meta-synthesis. The qualitative meta-synthesis revealed three major elements of PFCC relevant to young adults living with chronic disease and their family members: (1) patients and practitioners felt able to engage with each other on an emotional and social level; (2) patients and families felt empowered to be part of the care process; and (3) patients and families experienced care as effective at addressing their individual needs. There is agreement among young adult patients and families about what constitutes PFCC in a chronic disease setting, independent of the aetiology of the pathological process. Patients and families also have strong feelings about how practitioners can achieve PFCC in practice. These findings have implications for the delivery of health services to young adults living with chronic disease and their family members.

Background: A variety of outcome domains are currently measured for the assessment of hearing rehabilitation. To date, there is no consensus about which outcome domains should be measured, when they should be measured, and how they should be measured. In addition, most studies seeking to develop core outcome sets and measures for hearing rehabilitation services have primarily focussed on the opinions and expertise of researchers, and, to a lesser extent, clinicians, rather than also involving clients of those services. The principles of experience-based co-design suggest that health services, researchers, and policymakers should come together with clients and their families to design health services and define what metrics should be used for their success.Objectives: This study aimed to seek views and consensus from a range of key stakeholders to define which client-centred self-report outcome domains should be measured, when they should be measured, and how they should be measured, in a national publicly funded hearing rehabilitation scheme. In addition, the study aimed to identify current and future potential mechanisms and systems to standardise the collection of data and reporting of outcomes, to enable comparison across clients and hearing service providers.Methods: Two stakeholder groups participated in a three-round online Delphi process: (1) 79 professional stakeholders involved in the delivery of hearing services in Australia, and (2) 64 hearing rehabilitation services’ clients identified by not-for-profit consumer organisations. An initial set of in-person workshops scoped the key issues upon which to develop the initial open-ended questions and subsequent Likert-scale statements addressing these issues. These statements were then distributed to both groups in an online survey. The respondent ratings were summarised, and the summary was returned to respondents along with a second round of the survey. This process was then repeated once more. The five most important outcome domains from both groups were then combined, and a consensus workshop of seven professionals and three client advocates agreed on the top four ranked domains.Results: A range of potential outcome domains were identified as relevant indicators of successful hearing rehabilitation. Communication ability, personal relationships, wellbeing, and participation restrictions were identified as a core outcome domain set that should be measured as a minimum for patients receiving hearing rehabilitation. There was little agreement on the preferred timepoints for collection of outcome measures, with respondents expressing the view that this should be established by research once a set of outcome measures has been selected. However, there was broad agreement that measurements of these domains should be collected at baseline (before the provision of hearing rehabilitation) and no earlier than 3 months following the completion of rehabilitation. Potential benefits and issues with the development of a national outcomes database/collection system were also identified and prioritised, with participants highlighting the importance of valid, high-quality, trustworthy, and comprehensive data collection.Conclusion: These results provide a Core Outcome Domain Set for the self-reported evaluation of hearing rehabilitation and provide important background information for the design of methods to implement them across hearing healthcare systems. However, the wide range of outcome domains identified as potentially providing important additional information and the lack of specific measures to address these domains strongly suggest that there is still more research to be done. Ongoing stakeholder engagement will continue to be vital for future implementation. In addition, further research is required to determine the optimal time following hearing rehabilitation to utilise any particular outcome measure.

Background/Objectives: Uptake of remote cochlear implant (CI) services is feasible in clinical studies, but implementation into regular clinical practice is limited. Effective implementation requires demonstration of at least equivalent outcomes to in-person care. Use of outcome measures (e.g., specific tools such as speech tests or surveys) that are relevant and sensitive to both modes of service facilitates evidence-based provision of CI services. Following our previous study, which developed a core outcome domain set (CODS) (i.e., a set of CI outcome areas important to measure), this study aimed to (1) review current awareness and use of outcome measures implemented clinically, in-person, or remotely; and (2) provide recommendations for a pragmatic core outcome set (COS) to assess remote technologies for CI users. Methods: Expert Australian/New Zealand clinical CI professionals (n = 20) completed an online survey regarding use of, and familiarity with, pre-identified outcome measures mapping to the previously identified CODS. Respondents rated the outcomes’ usefulness, ease of use, trustworthiness, and recommendation for future use. Stakeholder workshops (clinician, n = 3, CI users n = 4) finalised recommendations. Results: Four of the six most regularly used and familiar measures were speech perception tests: BKB-A sentences, CNC words, CUNY sentences, and AB words. The long- and short-form Speech, Spatial, and Qualities of Hearing Scales (SSQ/SSQ-12) were the top-ranked patient-reported outcome measures (PROMs). These outcome measures were also perceived as the most trustworthy, easy to use, and likely to be used if recommended. Conclusions: A pragmatic COS, relevant to both remote and in-person delivery of CI services, including recommendations for measurement of service, clinician-measured and patient-reported outcomes, and how these might be developed in future, is recommended.

Patient- and family-centered care has been shown to improve outcomes across a range of health conditions. The purpose of this study was to determine the impact of interventions to improve the patient- and family-centeredness of care (PFCIs) on the effectiveness of care of young adults (16–25) with chronic health conditions. A segregated design mixed-methods systematic review with meta-analysis and meta-synthesis of the literature was conducted. Thirteen quantitative papers and three qualitative papers were identified for inclusion. Random-effects meta-analysis was performed on quantitative findings, and a meta-synthesis was performed on qualitative findings. Preliminary evidence suggests that PFCIs were associated with improvements in the self-efficacy of young people with chronic health conditions. However, there were very few identified studies, and those that were identified were primarily in the field of mental health, requiring ongoing further research.

Background/Objectives: Uptake of remote cochlear implant (CI) services is feasible in clinical studies, but implementation into regular clinical practice is limited. Effective implementation requires demonstration of at least equivalent outcomes to in-person care. Use of outcome measures that are relevant, and sensitive to both modes of service facilitates evidence-based provision of CI services. Following on from our study that developed a core outcome domain set (CODS), this study aimed to 1) review current awareness and use of outcome measures used clinically, in-person or remotely, and 2) provide recommendations for a pragmatic core outcome set (COS) to assess remote technologies for CI users. Methods: Expert Australian/New Zealand clinical CI professionals (n=20) completed an online survey regarding use of, and familiarity with, pre-identified outcome measures mapping to the previously identified CODS. Respondents rated the outcomes’ usefulness, ease of use, trustworthiness, and recommendation for future use. Stakeholder workshops (clinician, n=3, CI users n=4) finalised recommendations. Results: Four of the six most regularly used and familiar measures were speech perception tests: BKB-A sentences, CNC words, CUNY sentences, and AB words. The long- and short-form Speech, Spatial, and Qualities of Hearing Scales (SSQ/SSQ-12) were the top-ranked patient reported outcome measures (PROMs). These outcome measures were also perceived as the most trustworthy, easy to use, and likely to be used if recommended. Conclusions: A pragmatic COS, relevant to both remote and in-person delivery of CI services, including recommendations for measurement of service, clinician-measured and patient-reported outcomes and how these might be developed in future is recommended.

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