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Background: Substitute decision‐makers (SDMs) make decisions that honor medical, personal, and end‐of‐life wishes for older adults who have lost capacity, including those with dementia. However, SDMs often lack support, information, and problem‐solving tools required to make decisions and can suffer with negative emotional, relationship, and financial impacts. The need for adaptable supports has been identified in prior meta‐analyses. This scoping review identifies evidence‐based decision‐making resources/tools for SDMs, outlines domains of support, and determines resource/tool effectiveness and/or efficacy. Methods: The scoping review used the search strategy: Population—SDMs for older adults who have lost decision‐making capacity; Concept—supports, resources, tools, and interventions; Context—any context where a decision is made on behalf of an adult (>25 years). Databases included MEDLINE, Embase, CINAHL, PsycINFO, and Abstracts in Social Gerontology and SocIndex. Tools were scored by members on the research team, including patient partners, based on domains of need previously identified in prior meta‐analyses. Results: Two reviewers independently screened 5279 citations. Articles included studies that evaluated a resource/tool that helped a family/friend/caregiver SDMs outside of an ICU setting. 828 articles proceeded onto full‐text screening, and 25 articles were included for data extraction. The seventeen tools identified focused on different time points/decisions in the dementia trajectory, and no single tool encompassed all the domains of caregiver decision‐making needs. Conclusion: Existing tools may not comprehensively support caregiver needs. However, combining tools into a toolkit and considering their application relevant to the caregiver's journey may start to address the gap in current supports. [ABSTRACT FROM AUTHOR]

Introduction: Patient engagement in patient‐oriented research (POR) is described as patients collaborating as active and equal research team members (patient research partners [PRPs]) on the health research projects and activities that matter to them. The Canadian Institutes of Health Research (CIHR), Canada's federal funding agency for health research, asks that patients be included as partners early, often and at as many stages of the health research process as possible. The objective of this POR project was to co‐build an interactive, hands‐on training programme that could support PRPs in understanding the processes, logistics and roles of CIHR grant funding applications. We also conducted a patient engagement evaluation, capturing the experiences of the PRPs in co‐building the training programme. Methods: This multiphased POR study included a Working Group of seven PRPs with diverse health and health research experiences and two staff members from the Patient Engagement Team. Seven Working Group sessions were held over the 3‐month period from June to August 2021. The Working Group worked synchronously (meeting weekly online via Zoom) as well as asynchronously. A patient engagement evaluation was conducted after the conclusion of the Working Group sessions using a validated survey and semi‐structured interviews. Survey data were analysed descriptively and interview data were analysed thematically. Results: The Working Group co‐built and co‐delivered the training programme about the CIHR grant application process for PRPs and researchers in five webinars and workshops. For the evaluation of patient engagement within the Working Group, five out of seven PRPs completed the survey and four participated in interviews. From the survey, most PRPs agreed/strongly agreed to having communication and supports to engage in the Working Group. The main themes identified from the interviews were working together‐communication and supports; motivations for joining and staying; challenges to contributing; and impact of the Working Group. Conclusion: This training programme supports and builds capacity for PRPs to understand the grant application process and offers ways by which they can highlight the unique experience and contribution they can bring to each project. Our co‐build process presents an example and highlights the need for inclusive approaches, flexibility and individual thinking and application. Patient or Public Contribution: The objective of this project was to identify the aspects of the CIHR grant funding application that were elemental to having PRPs join grant funding applications and subsequently funded projects, in more active and meaningful roles, and then to co‐build a training programme that could support PRPs to do so. We used the CIHR SPOR Patient Engagement Framework, and included time and trust, in our patient engagement approaches to building a mutually respectful and reciprocal co‐learning space. Our Working Group included seven PRPs who contributed to the development of a training programme. We suggest that our patient engagement and partnership approaches, or elements of, could serve as a useful resource for co‐building more PRP‐centred learning programmes and tools going forward. [ABSTRACT FROM AUTHOR]

Introduction: Effective engagement of underrepresented communities in health research and policy remains a challenge due to barriers that hinder participation. Our study had two objectives: (1) identify themes of person‐centred care (PCC) from perspectives of diverse patients/caregivers that would inform the development of person‐centred quality indicators (PC‐QIs) for evaluating the quality of PCC and initiatives to improve PCC and (2) explore innovative participatory approaches to engage ethnocultural communities in qualitative research. Methods: Drawing on participatory action research methods, we partnered with a community‐based organization to train six 'Community Brokers' from the Chinese, Filipino, South Asian, Latino‐Hispanic, East African and Syrian communities, who were engaged throughout the study. We also partnered with the provincial health organization to engage their Patient and Family Advisory, who represented further aspects of diversity. We conducted focus group discussions with patients/caregivers to obtain their perspectives on their values, preferences and needs regarding PCC. We identified themes through our study and engaged provincial stakeholders to prioritize these themes for informing the development of PC‐QIs and codesign initiatives for improving PCC. Results: Eight focus groups were conducted with 66 diverse participants. Ethnocultural communities highlighted themes related to access and cost of care, language barriers and culture, while the Patient and Family Advisory emphasized patient and caregiver engagement. Together with provincial stakeholders, initiatives were identified to improve PCC, such as codesigning innovative models of training and evaluation of healthcare providers. Conclusion: Incorporating patient and community voices requires addressing issues related to equity and understanding barriers to effective and meaningful engagement. Patient or Public Contribution: Patient and public engagement was central to our research study. This included partnership with a community‐based organization, with a broad network of ethnocultural communities, as well as the provincial health service delivery organization, who both facilitated the ongoing engagement of diverse patients/caregiver communities throughout our study including designing the study, recruiting participants, collecting and organizing data, interpreting findings and mobilizing knowledge. Drawing from participatory action research methods, patients and the public were involved in the codesign of the PC‐QIs and initiatives to improve PCC in the province based on the findings from our study. [ABSTRACT FROM AUTHOR]

Background: Engaging patients in health care, research and policy is essential to improving patient‐important health outcomes and the quality of care. Although the importance of patient engagement is increasingly acknowledged, clinicians and researchers still find it difficult to engage patients, especially paediatric patients. To facilitate the engagement of children and adolescents in health care, the aim of this project is to develop an engagement game. Methods: A user‐centred design was used to develop a patient engagement game in three steps: (1) identification of important themes for adolescents regarding their illness, treatment and hospital care, (2) evaluation of the draft version of the game and (3) testing usability in clinical practice. Adolescents (12–18 years) were engaged in all steps of the development process through focus groups, interviews or a workshop. These were audio‐recorded, transcribed verbatim and analysed in MAXQDA. Results: (1) The important themes for adolescents (N = 15) were included: visiting the hospital, participating, disease and treatment, social environment, feelings, dealing with staff, acceptation, autonomy, disclosure and chronically ill peers. (2) Then, based on these themes, the engagement game was developed and the draft version was evaluated by 13 adolescents. Based on their feedback, changes were made to the game (e.g., adjusting the images and changing the game rules). (3) Regarding usability, the pilot version was evaluated positively. The game helped adolescents to give their opinion. Based on the feedback of adolescents, some last adjustments (e.g., changing colours and adding a game board) were made, which led to the final version of the game, All Voices Count. Conclusions: Working together with adolescents, All Voices Count, a patient engagement game was developed. This game provides clinicians with a tool that supports shared decision‐making to address adolescents' wishes and needs. Patient or Public Contribution: Paediatric patients, clinicians, researchers, youth panel of Fonds NutsOhra and patient associations (Patient Alliance for Rare and Genetic Diseases, Dutch Childhood Cancer Organization) were involved in all phases of the development of the patient engagement game—from writing the project plan to the final version of the game. [ABSTRACT FROM AUTHOR]

Objective: To evaluate the effectiveness of person‐centred quality improvement strategies on the management and control of adults with hypertension in primary care. Methods: A systematic review and meta‐analysis was conducted using the Medline, Cochrane Central Register for Controlled Trials, Embase, Cumulative Index to Nursing and Allied Health Literature, and APA PsycINFO databases (January 1980 to March 2020). Randomized controlled trials that evaluated person‐centred quality improvement strategies for the management and control of essential hypertension among adults (≥18 years) in primary care were included. Random effects models were used to estimate weighted mean differences (WMD) for the change in systolic and diastolic blood pressures (SBP, DBP) from baseline; risk ratios (RR) were calculated for the proportion of participants achieving target blood pressures, for each quality improvement strategy assessed. A qualitative review of the implementation details of the interventions was conducted to identify common components of interventions that were effective in improving blood pressure outcomes. Results: Eight studies were included (total of 5654 patients). Findings favour use of person‐centred quality improvement interventions over usual care (RR = 1.23 [95% CI: 1.01; 1.48]) for improving blood pressure outcomes. Self‐management (RR = 1.43 [95% CI: 1.23; 1.65]) had the greatest effects on blood pressure targets. Clinician education resulted in the greatest SBP reduction (WMD:6.09 mmHg [95% CI: 2.32; 9.85]), while patient education and patient reminder systems (both WMD:4.86 mmHg [95% CI: 0.88; 8.83]) saw the most improvements in DBP. While interventions varied in their strategy implementation, common features of effective interventions included tailored communication with patients, use of health information technology, and multidisciplinary collaboration. Conclusion: Person‐centred quality improvement strategies were effective in improving blood pressure outcomes. Further research is needed regarding the context of implementing interventions to provide greater insight into the components of a person‐centred quality improvement intervention most effective in improving hypertension outcomes. [ABSTRACT FROM AUTHOR]

Objective: The study objective was to test the acceptability of a self‐management program (SMP) for adolescents with juvenile idiopathic arthritis (JIA) focused on disease information, self‐management, and social support needs. Methods: This study was conducted using inductive qualitative methods to explore the acceptability of an in‐person/videoconference SMP. Two groups of four adolescents with JIA (mean age = 13.5, SD = 0.8) and two groups of pediatric rheumatology health care professionals (n = 4, n = 5) participated in four feedback sessions each. The SMP was presented to study participants, and feedback was provided on the content, format, and structure of the program. Thematic analysis was used to analyze the data. Results: Adolescents felt that the content was appropriate and would be effective in supporting self‐management of their arthritis. Participants advised that the trustworthiness of the information would be increased if a rheumatology health care provider facilitated the session. Potential barriers to participation included distance and availability (weekdays and times), but the option for videoconference‐based participation was an appropriate solution to both of these issues. Minor changes were made to content and format, and required changes were made to address participant recommendations for improvement. Conclusion: This study confirmed the acceptability of an in‐person/videoconference SMP for patients with JIA. Modifications were made to the SMP based on the focus group feedback, and future directions include a pilot randomized controlled trial to assess feasibility and preliminary effectiveness of the program. [ABSTRACT FROM AUTHOR]

The Pan American Health Organization (PAHO)-World Hypertension League (WHL) Hypertension Monitoring and Evaluation Framework is summarized. Standardized indicators are provided for monitoring and evaluating national or subnational hypertension control programs. Five core indicators from the World Health Organization hearts initiative and a single PAHO-WHL core indicator are recommended to be used in all hypertension control programs. In addition, hypertension control programs are encouraged to select from 14 optional qualitative and 33 quantitative indicators to facilitate progress towards enhanced hypertension control. The intention is for hypertension programs to select quantitative indicators based on the current surveillance mechanisms that are available and what is feasible and to use the framework process indicators as a guide to program management. Programs may wish to increase or refine the number of indicators they use over time. With adaption the indicators can also be implemented at a community or clinic level. The standardized indicators are being pilot tested in Cuba, Colombia, Chile, and Barbados. [ABSTRACT FROM AUTHOR]

Abstract: Background: Globally, health‐care systems and organizations are looking to improve health system performance through the implementation of a person‐centred care (PCC) model. While numerous conceptual frameworks for PCC exist, a gap remains in practical guidance on PCC implementation. Methods: Based on a narrative review of the PCC literature, a generic conceptual framework was developed in collaboration with a patient partner, which synthesizes evidence, recommendations and best practice from existing frameworks and implementation case studies. The Donabedian model for health‐care improvement was used to classify PCC domains into the categories of “Structure,” “Process” and “Outcome” for health‐care quality improvement. Discussion: The framework emphasizes the structural domain, which relates to the health‐care system or context in which care is delivered, providing the foundation for PCC, and influencing the processes and outcomes of care. Structural domains identified include: the creation of a PCC culture across the continuum of care; co‐designing educational programs, as well as health promotion and prevention programs with patients; providing a supportive and accommodating environment; and developing and integrating structures to support health information technology and to measure and monitor PCC performance. Process domains describe the importance of cultivating communication and respectful and compassionate care; engaging patients in managing their care; and integration of care. Outcome domains identified include: access to care and Patient‐Reported Outcomes. Conclusion: This conceptual framework provides a step‐wise roadmap to guide health‐care systems and organizations in the provision PCC across various health‐care sectors. [ABSTRACT FROM AUTHOR]

Background and aims: Patient‐centered care (PCC) benefits patients, health‐care providers, and health‐care systems by providing delivery of care that addresses patient values and needs while improving provider experiences, and by decreasing health‐care expenditure. To improve PCC, health‐care systems need to measure it. Recently, we developed a PCC framework that is evidence based and patient informed. The purpose of this study was to gather the perspective of clinician‐scientists and quality improvement experts regarding the PCC domains included in the framework. Their perspectives were used to refine these domains, which ultimately will inform the development of PCC quality indicators. Methods: Participants were recruited via expert and snowball sampling. Semi‐structured interviews were conducted with clinician‐scientists and quality improvement experts from Canada, the United States, and the United Kingdom from October 2017 to January 2018. With the use of an interview guide developed using the PCC framework, interviews were audio recorded and transcribed for a thematic analysis using NVivo qualitative data analysis software. Inductive thematic analysis was used to identify themes and subthemes. Results: Sixteen semi‐structured interviews were conducted, which included four clinician‐scientists and 12 quality improvement experts. Twelve of the participants were from Canada, three from the United Kingdom, and one from the United States. From the thematic analysis, three major themes were identified: (a) measurability of PCC, (b) practical considerations for implementing measurement, and (c) policy and practice implications. Participants discussed barriers and recommendations to improve and increase the clarity of the PCC domains in health system reporting, resulting in several future directions to refine and target specific PCC domains. Conclusion: Clinician‐scientists and quality improvement experts provided key recommendations for the measurement of PCC. The perspectives of key stakeholders in PCC measurement will inform strategies for the implementation and uptake of patient‐centered quality indicators in health‐care systems. The views of these key experts can lay the foundation for the development of standardized measures of PCC, to ensure monitoring and improvement of PCC. [ABSTRACT FROM AUTHOR]

Subjective evaluation of medical care and disease outcomes from patients' perspectives has become increasingly important. Patient‐reported outcome measures (PROMs) play a prominent role in engaging patients, capturing their experiences and improving patient care. This systematic review sought to identify PROMs that are used in the field of pediatric solid organ transplantation, with the aim to inform the implementation of PROMs into clinical practice for this population. A systematic review of English language, peer‐reviewed articles was performed on key health science databases to identify publications using PROMs in pediatric solid organ transplantation. The search yielded 3670 articles, with a final data set of 62 articles that included 47 different PROMs. The three most frequently used PROMs included the following: (a) PedsQL™ Generic Core Scales (n = 25); (b) Children's Depression Inventory (n = 6); and (c) Child Health Questionnaire (n = 6). Of the 47 PROMs, 42 were generic and five were disease‐specific; only six PROMS had a documented psychometric evaluation within a pediatric solid organ transplant population. This review outlines the attributes of the instruments (eg, domains captured), as well as the psychometric properties of those evaluated. PROMs are increasingly used in the field of pediatric transplantation; however, there are limited details in the current literature about their conceptual underpinnings and psychometric properties. This review highlights the need for additional psychometric evaluation of identified measures to establish the necessary foundation to inform the implementation of PROMs into clinical care for pediatric solid organ transplant patients. [ABSTRACT FROM AUTHOR]