Improving the transition from paediatric to adult healthcare: a scoping review on the recommendations of young adults with lived experience.

OBJECTIVE: The goal of this review was to identify recommendations within the literature on how to improve the transition from paediatric to adult healthcare from the perspective of young adults (YAs) living with chronic conditions who have gone through the process. DESIGN: This review was conducted in accordance with JBI methodology for scoping reviews. SEARCH STRATEGY: We searched MEDLINE (Ovid), CINAHL (EBSCO), PsycINFO (EBSCO) and EMBASE (Elsevier) databases, and conducted a grey literature search for relevant material. The databases were searched in December 2019, and re-searched June 2020 and September 2020, while the grey literature was searched in April 2020. This scoping review focused on the recommendations of YAs with chronic conditions who have transitioned from paediatric to adult healthcare, in any setting (eg, hospital, clinic or community), and across all sectors (eg, health, education and social services). RESULTS: Eighteen studies met inclusion criteria for this review. These studies included YAs with 14 different chronic conditions, receiving primary health services in North America (67%) and Europe (33%). YAs' recommendations for improving the transition from paediatric to adult healthcare (n=number of studies reported) included: improving continuity of care (n=12); facilitating patient-centred care (n=9); building strong support networks (n=11) and implementing transition education preparedness training (n=7). CONCLUSION: Review findings can benefit service delivery by addressing important barriers to health, education, and social services for youth transitioning to adult healthcare.

Reconciling validity and challenges of patient comfort and understanding: Guidelines to patient-oriented questionnaires.

BACKGROUND: Patient-reported outcome measures (PROMs) are widely recognized as important tools for achieving a patient-centred approach in health research. While PROMs are subject to several stages of validation during development, even questionnaires with robust psychometric properties may challenge patient comfort and understanding. AIM: Building on the experience of patient engagement in the PriCARE research programme, this paper outlines the team's response to concerns raised by patient partners regarding the administration of the questionnaire. METHODS: Based on a participatory action research design and the patient engagement framework in the Strategy for Patient-Oriented Research of the Canadian Institutes of Health Research, PriCARE team members worked together to discuss concerns, review the questionnaires and come up with solutions. Data were collected through participant observation of team meetings. RESULTS: This paper demonstrates how patient partners were engaged in PriCARE and integrated into the programme's governance structure, focusing on the challenges that they raised regarding the questionnaires and how these were addressed by PriCARE team members in a six-step approach: (1) Recognizing patient partner concerns, discussing concerns and reframing the challenges; (2) Detailing and sharing evidence of the validity of the questionnaires; (3) Evaluating potential solutions; (4) Searching the literature for guidelines; (5) Creating guidelines; and (6) Sharing and refining guidelines. CONCLUSION: This six-step approach demonstrates how research teams can integrate patient partners as equal members, develop meaningful collaboration through recognition of individual experiences and expertise and ensure that the patient perspective is taken into consideration in research and healthcare innovation. PATIENT OR PUBLIC CONTRIBUTION: All patient partners from the PriCARE programme were actively involved in the six-step approach. They were also involved in the preparation of the manuscript.

Protocol for a mixed-method analysis of implementation of case management in primary care for frequent users of healthcare services with chronic diseases and complex care needs.

INTRODUCTION: Case management (CM) in a primary care setting is a promising approach to integrating and improving healthcare services and outcomes for patients with chronic conditions and complex care needs who frequently use healthcare services. Despite evidence supporting CM and interest in implementing it in Canada, little is known about how to do this. This research aims to identify the barriers and facilitators to the implementation of a CM intervention in different primary care contexts (objective 1) and to explain the influence of the clinical context on the degree of implementation (objective 2) and on the outcomes of the intervention (objective 3). METHODS AND ANALYSIS: A multiple-case embedded mixed-methods study will be conducted on CM implemented in ten primary care clinics across five Canadian provinces. Each clinic will represent a subunit of analysis, detailed through a case history. Cases will be compared and contrasted using multiple analytical approaches. Qualitative data (objectives 1 and 2) from individual semistructured interviews (n=130), focus group discussions (n=20) and participant observation of each clinic (36 hours) will be compared and integrated with quantitative (objective 3) clinical data on services use (n=300) and patient questionnaires (n=300). An evaluation of intervention fidelity will be integrated into the data analysis. ETHICS AND DISSEMINATION: This project received approval from the CIUSSS de l'Estrie - CHUS Research Ethic Board (project number MP-31-2019-2830). Results will provide the opportunity to refine the CM intervention and to facilitate effective evaluation, replication and scale-up. This research provides knowledge on how to resp ond to the needs of individuals with chronic conditions and complex care needs in a cost-effective way that improves patient-reported outcomes and healthcare use, while ensuring care team well-being. Dissemination of results is planned and executed based on the needs of various stakeholders involved in the research.