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Background: Coronary artery disease (CAD) confers increased risks of premature mortality, non-fatal morbidity, and significant impairment in functional status and health-related quality of life. Routine administration of electronic patient-reported outcome measures (PROMs) and its real time delivery to care providers is known to have the potential to inform routine cardiac care and to improve quality of care and patient outcomes. This study describes a user-centered development and evaluation of the Alberta Provincial Project for Outcomes Assessment (APPROACH) electronic Patient Reported Outcomes Measurement (e-PROM) system. This e-PROM system is an electronic system for the administration of PROMs to patients with CAD and the delivery of the summarized information to their care providers to facilitate patient-physician communication and shared decision-making. This electronic platform was designed to be accessible via web-based and hand-held devices. Heuristic and user acceptance evaluation were conducted with patients and attending care providers. Results: The APPROACH e-PROM system was co-developed with patients and care providers, research investigators, informaticians and information technology experts. Five PROMs were selected for inclusion in the online platform after consultations with patient partners, care providers, and PROMs experts: the Seattle Angina Questionnaire, Patient Health Questionnaire, EuroQOL, and Medical Outcomes Study Social Support Survey, and Self-Care of Coronary Heart Disease Inventory. The heuristic evaluation was completed by four design experts who examined the usability of the prototype interfaces. User acceptance testing was completed with 13 patients and 10 cardiologists who evaluated prototype user interfaces of the e-PROM system. Conclusion: Both patients and physicians found the APPROACH e-PROM system to be easy to use, understandable, and acceptable. The APPROACH e-PROM system provides a user-informed electronic platform designed to incorporate PROMs into the delivery of individualized cardiac care for persons with CAD. [ABSTRACT FROM AUTHOR]

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]

The study objective was to explore the experiences of parents of children (6–17 years) with complex mental healthcare needs in accessing healthcare services in Alberta, Canada. Parents were interviewed using a semi-structured guide with open-ended and probing questions. Interviews were audio recorded and transcribed verbatim. Thematic analysis revealed three main themes: (1) Fragmented healthcare services profoundly impacted participants' experience of mental health care due to (a) a lack of a collaborative approach across disciplines in the healthcare system; (b) unavailability of information related to mental health care and (c) a lack of patient-centred care. (2) Navigating the complex healthcare system was difficult due to fragmented services and was hindered by gaps in accessing and receiving care, lack of continuity of care and lack of resources. (3) Distressed parents discussed the emotional challenges, financial burdens, self-advocacy and stigma they experienced in navigating the system. Parents offered insights into potential solutions to these gaps. Parents recommended the creation of a one-stop shop service with a team approach led by a navigator to facilitate and support navigations across healthcare services that work collaboratively across disciplines among healthcare services and across sectors inclusive of social services, education, policing and community programmes. [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]