Multistakeholder Recommendations for Supporting Patients and Families Transitioning From Paediatric to Adult Congenital Heart Disease Care.

Background: Transitioning from paediatric to adult congenital heart disease (CHD) care is a high-risk time for being lost to follow-up. Existing CHD transition programmes have not included patients, caregivers, and health care providers as partners in their development. This study aimed to develop recommendations for a CHD transition programme driven by lived and clinical experiences. Methods: We used a multilevel participatory process that engaged adult and paediatric people living with CHD, their caregivers, and CHD health care providers as members of the research team. We also consulted members of these stakeholder groups through a series of 3 virtual workshops that culminated in the generation of recommendations for the essential components of a CHD transition programme. Results: The Transition Essentials recommendations inform what information, education, or support is required, who should provide it, and when and how it should be provided. Information, education, and support for self-management and knowledge are required for people living with CHD. Caregivers require information, education, and support to build capacity in people living with CHD and navigate their new role in their loved ones' life. The health care team should provide this information, education, and support with peer support options when people living with CHD are 15-22 years of age. This information, education, and support should be individualized, navigate limitations, build over time, have multimodal options, and be available virtually or in person. Conclusions: Engaging those with lived and clinical expertise to develop recommendations for the essential components of a CHD transition programme provides important insights missing from previous studies.

Contexte: La transition des personnes qui vivent avec une cardiopathie congénitale (CC) entre les soins pédiatriques et les soins destinés aux adultes constitue une période où le risque de perte de vue est élevé. Les programmes de transition existants n'ont pas été élaborés avec la participation des patients, des aidants ou des fournisseurs de soins de santé. La présente étude visait à mettre en place des recommandations fondées sur la réalité des personnes concernées et sur l'expérience clinique pour les programmes de transition en contexte de CC. Méthodologie: Nous avons fait appel à un processus participatif à plusieurs niveaux dans lequel des enfants et des adultes vivant avec la CC, des aidants et des fournisseurs de soins de santé du domaine de la CC ont été impliqués comme membres de l'équipe de recherche. Nous avons également mené des consultations auprès de ces groupes d'intervenants dans une série de trois ateliers virtuels qui ont mené à la rédaction de recommandations sur les composantes essentielles d'un programme de transition pour les personnes vivant avec une CC. Résultats: Les recommandations portant sur les impératifs d'une transition réussie énoncent les renseignements, la formation et le soutien nécessaires ainsi que les intervenants qui devraient les offrir, de quelle façon et à quel moment. Les personnes qui vivent avec une CC ont besoin de renseignements, de formation et de soutien pour l'autoprise en charge et l'accès aux connaissances. Quant aux aidants, ils ont aussi besoin de renseignements, de formation et de soutien pour mieux outiller les personnes qui vivent avec une CC et pour mieux comprendre leur nouveau rôle dans la vie de leur proche. Il conviendrait que les professionnels de la santé soient ceux qui offrent ces ressources, lesquelles devraient être personnalisées, tenir compte des lacunes à combler, être cumulatives, offrir des options multimodales et être accessibles en personne ou virtuellement. Les personnes de 15 à 22 ans qui vivent avec une CC devraient également avoir la possibilité de s'entraider. Conclusions: La participation des personnes qui ont une expertise ancrée dans la réalité et une expertise clinique afin de formuler des recommandations sur les éléments essentiels d'un programme de transition pour les personnes qui vivent avec une CC a permis d'obtenir des renseignements intéressants qui ne se trouvaient pas dans les études antérieures.

Patient and caregiver preferences and prioritized outcomes for cardiac surgery: A scoping review and consultation workshop.

OBJECTIVE(S): In light of the absence of patient and caregiver input in Enhanced Recovery After Surgery Cardiac Surgery guideline development, we conducted a scoping review to identify patient and caregiver preferences and prioritized outcomes related to perioperative care in cardiac surgery and its lifelong impact. METHODS: Five electronic databases were searched to retrieve studies investigating patient or caregiver preferences and prioritized outcomes. Information was charted in duplicate and analyzed using descriptive statistics or thematic analysis. A patient and caregiver consultation workshop validated scoping review findings and solicited novel preferences and outcomes. RESULTS: Of the 5292 articles retrieved, 43 met inclusion criteria. Most were from Europe (n = 19, 44%) or North America (n = 15, 35%) and qualitative and quantitative designs were represented in equal proportions. Fifty-two methods were used to obtain stakeholder preferences and prioritized outcomes, the majority being qualitative in nature (n = 32, 61%). Based on the collective preferences of 3772 patients and caregivers from the review and 17 from the consultation workshop, a total of 108 patient preferences, 32 caregiver preferences, and 19 prioritized outcomes were identified. The most commonly identified theme was "information and education." Improved quality of life was the most common patient-prioritized outcome, and all caregiver-prioritized outcomes were derived from the consultation workshop. CONCLUSIONS: Patient and caregiver preferences overlap with Enhanced Recovery After Surgery Cardiac Surgery recommendations targeting preoperative risk reduction strategies, prehabilitation, patient engagement technology, and intra- and postoperative strategies to reduce discomfort. To support clinical practice, future research should investigate associations with key surgical outcomes.

Barriers to Successful Discharge After Cardiac Surgery: A Focus Group Study and Cross-Sectional Survey.

At present, there is a lack of information on patient and caregiver values, and perceived priorities and barriers, to guide successful post-discharge recovery. This was a single center, multiple methods study that investigated patient, caregiver, and health care provider perceptions of the discharge process after cardiac surgery. Themes emerging from focus group discussions with patients and caregivers were used to develop surveys relating to values, barriers, and challenges relating to the discharge process. Thirty-two patients (n = 16) and caregivers (n = 16) participated in four separate focus groups. Four themes emerged from these discussions: (1) a lack of understanding about what the discharge process entails and when discharge is appropriate, (2) issues relating to the information provided to patients at the time of discharge, (3) participant experiences with the health care system, and (4) the experiences of caregivers. Seventy-eight patients, 34 caregivers, 53 nurses and/or other allied health professionals, and 8 surgeons completed the cross-sectional surveys. The most important component of the discharge process for patients and caregivers was "knowing what to do in an emergency." Health care providers less accurately identified what caregivers perceived as the most important aspects of the discharge process.Statements relating to informational barriers to discharge were the most discordant among patient and caregiver respondents. After discharge, patients and caregivers identified the need for longer-term follow up with the surgeon and more support in the community. Incorporation of patient and caregiver values to guide the post-cardiac surgery discharge process is essential to promote successful recovery.

Protocol for a scoping review to map patient engagement in scoping reviews.

BACKGROUND: Scoping reviews of health research are increasing in popularity. However, only a minority of scoping reviews in this sector engage patients and caregivers as co-producers of the research. Despite developments in scoping review methodology, which insist that stakeholder consultation is essential, no guiding methods exist to instruct the conduct of this stage. Thus, it is necessary to understand how patients and caregivers have been engaged as part of scoping reviews, toward a unifying methodology. METHODS: We have developed a protocol for a scoping review of methods used to engage patients and caregivers in scoping reviews of health research. The search strategy will comprise two phases: the first will involve a secondary analysis of retrieved articles from a prior scoping review, and the second will identify articles that cite Levac et al.'s update to the original scoping review framework by Arksey and O'Malley. Titles and full texts of retrieved articles will be screened in duplicate. Inclusion will be limited to articles related to heath research that follow the six-stage scoping review framework by Arksey and O'Malley and that report patient engagement activities during at least one stage. The method of analysis of charted variables will be decided once data have been collected. Two patients will be engaged as collaborators throughout this review. We will also consult with patients, caregivers, and researchers upon completion of preliminary analyses. DISCUSSION: We anticipate that our scoping review will provide guidance for researchers seeking to involve health care stakeholders as co-producers of scoping reviews.

A "scoping review" is a type of study that collects and summarizes published and unpublished research reports to better understand the amount and types of information available on a particular topic. There is a well-known framework for how to conduct a scoping review, which involves six stages. The sixth stage is optional, and involves consulting with people who have an interest in the research results (i.e., people who the research is "about" or who it will affect the most). Very few scoping reviews actually include this stage, potentially due to a lack of practical guidance on how to perform it. For scoping reviews related to health research, it is important to consult or more widely engage patients and caregivers in the scoping review's conduct because these individuals have a unique type of knowledge that comes from their experience of a health issue, which can yield valuable insights. Therefore, we have designed a scoping review that will identify the ways in which patients and caregivers have been engaged in scoping reviews of health research in the past. We hope to produce recommendations to make it easier for other researchers to engage patients and caregivers in scoping reviews.

Use of a mobile health application by adult non-congenital cardiac surgery patients: A feasibility study.

Mobile Health (mHealth) technologies are becoming integral to our healthcare system. This study evaluated the feasibility (compliance, usability and user satisfaction) of a mHealth application (app) for delivering Enhanced Recovery Protocols (ERPs) information to Cardiac Surgery (CS) patients peri-operatively. This single centre, prospective cohort study involved patients undergoing CS. Patients received a mHealth app developed for the study at consent and for 6-8 weeks post-surgery. Patients completed system usability, patient satisfaction and quality of life surveys pre- and post-surgery. A total of 65 patients participated in the study (mean age of 64 years). The app achieved an overall utilization rate of 75% (68% vs 81% for <65 and ≥65 years respectively). Pre-surgery, the majority of patients found the app easy to use (94%), user-friendly (89%), and felt confident using the app (92%). The majority also found the app's educational information useful (90%) and easy to find (88%). 75% of patients reported that they would like to use the app frequently. This percentage decreased to 57% in the post-discharge survey. A lower percentage of patients ≥65 years indicated their preference for the app over printed information (51% vs 87%) and their recommendation for the app (84% vs 100% for >65 and <65 years respectively) in the post-surgery survey. MHealth technology is feasible for peri-operative CS patient education, including older adult patients. The majority of patients were satisfied with the app and would recommend using it over the use of printed materials.

Putting patient value first: Using a modified nominal group technique for the implementation of enhanced recovery after cardiac surgery recommendations.

Objective: In 2019, the Society for Enhanced Recovery After Cardiac Surgery (ERAS-CS) published perioperative guidelines to optimize the care of patients undergoing cardiac surgery. For centers with limited capacity, a sequential approach to the implementation of the full guidelines may be more feasible. Therefore, we aimed to explore the priority of implementation of the ERAS-CS guideline recommendations from a patient and caregiver perspective. Methods: Using a modified nominal group technique, individuals who previously underwent cardiac surgery and their caregivers ranked ERAS-CS recommendations within 3 time points (ie, preoperative, intraoperative, and postoperative) and across 2 to 3 voting rounds. Final round rankings (median, mean and first quartile) were used to determine relative priorities. Results: Seven individuals (5 patients and 2 caregivers) participated in the study. Patient engagement tools (2, 2.29, and 1.50), surgical site infection reduction (2, 1.67, and 1.25), and postoperative systematic delirium screening (1, 2.43, and 1.00) were the top-ranked ERAS-CS recommendations in the preoperative, intraoperative, and postoperative time points, respectively. Conclusions: Exploration of patient and caregiver priorities may provide important insights to guide the healthcare team with clinical pathway development and implementation. Further study is needed to understand the impact of the integration of patient and caregiver values on effective and sustainable clinical pathway implementation.

Patient Engagement in the Design of a Mobile Health App That Supports Enhanced Recovery Protocols for Cardiac Surgery: Development Study.

BACKGROUND: Despite the importance of their perspectives, end users (eg, patients, caregivers) are not typically engaged by academic researchers in the development of mobile health (mHealth) apps for perioperative cardiac surgery settings. OBJECTIVE: The aim of this study was to describe a process for and the impact of patient engagement in the development of an mHealth app that supports patient and caregiver involvement with enhanced recovery protocols during the perioperative period of cardiac surgery. METHODS: Engagement occurred at the level of consultation and took the form of an advisory panel. Patients who underwent cardiac surgery (2017-2018) at St. Boniface Hospital (Winnipeg, Manitoba) and their caregivers were approached for participation. A qualitative exploration determined the impact of patient engagement on the development (ie, design and content) of the mHealth app. This included a description of (1) the key messages generated by the advisory panel, (2) how key messages were incorporated into the development of the mHealth app, and (3) feedback from the developers of the mHealth app about the key messages generated by the advisory panel. RESULTS: The advisory panel (N=10) generated 23 key messages to guide the development of the mHealth app. Key design-specific messages (n=7) centered around access, tracking, synchronization, and reminders. Key content-specific messages (n=16) centered around medical terms, professional roles, cardiac surgery procedures and recovery, educational videos, travel, nutrition, medications, resources, and physical activity. This information was directly incorporated into the design of the mHealth app as long as it was supported by the existing functionalities of the underlying platform. For example, the platform did not support the scheduling of reminders by users, identifying drug interactions, or synchronizing with other devices. The developers of the mHealth app noted that key messages resulted in the integration of a vast range and volume of information and resources instead of ones primarily focused on surgical information, content geared toward expectations management, and an expanded focus to include caregivers and other family members, so that these stakeholders may be directly included in the provision of information, allowing them to be better informed, prepare along with the patient, and be involved in recovery planning. CONCLUSIONS: Patient engagement may facilitate the development of a detail-oriented and patient-centered mHealth app whose design and content are driven by the lived experiences of end users.