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  • Writer's pictureNehal Swami

Case Study: PARTNER: Patient-Centered Research in Pediatric Transplant-Engaging Families+Recipients

Updated: Apr 20, 2023

For The Patient-Centered Outcomes Research Institute (PCORI)

 

The Patient-Centered Outcomes Research Institute (PCORI) is dedicated to funding research that provides patients, caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. The PARTNER Project is a PCORI-funded research study that aims to understand the role and impact of family engagement in pediatric transplant care. The project focuses on two areas: (1) patient-centered outcomes related to family engagement in pediatric transplant care, including patient and family satisfaction with care; and (2) the development of strategies and tools to ensure effective family engagement in pediatric transplant care.


Background

Pediatric transplant care is a complex process that requires close collaboration between patients, families, and healthcare providers. Despite advances in medical technology, there is limited research on the effectiveness of family engagement in pediatric transplant care. PARTNER seeks to address this gap by exploring the role of family engagement in pediatric transplant care and developing strategies to ensure effective family engagement. To facilitate data collection and analysis, PARTNER has developed the RealTime Clinic – an online platform where patients, families, and healthcare providers can share their experiences in real time. The RealTime Clinic includes a variety of data collection tools such as surveys, interviews, and discussion forums.


Methodology

The study was designed as a mixed methods research project involving both qualitative and quantitative data collection. The study incorporated data from a series of focus groups with patients, families, healthcare providers, and other stakeholders. In addition, the study included a survey of healthcare providers to assess their perceptions of family engagement in pediatric transplant care. Data for the study was collected using a variety of methods including focus groups, interviews, surveys, and online discussion forums. Through the RealTime Clinic, PARTNER aims to provide unique insights into the experiences of patients, families, and healthcare providers in pediatric transplant care. Data from the focus groups and interviews was analyzed using thematic analysis. Data from the survey was analyzed using descriptive statistics. Online discussion forum data was analyzed using content analysis.


Results

The study found that family engagement is an important factor in pediatric transplant care. Patients and families reported improved quality of life when families were involved in decision making related to transplant care. Healthcare providers reported improved communication when families were involved in decision making related to transplant care. The study also identified several barriers to effective family engagement in pediatric transplant care. The RealTime Clinic provided unique insights into the experiences of patients, families, and healthcare providers in pediatric transplant care that would not have been possible without the platform. The platform allowed for real time conversations between patients, families, and healthcare providers which enabled a more holistic understanding of the patient experience.


Conclusion

This study continues to highlight the importance of family engagement in pediatric transplant care and provides evidence for the need for further research into this area. The findings from this study will be used to inform future interventions aimed at improving family engagement in pediatric transplant care. Future research should focus on developing strategies to improve family engagement in pediatric transplant care. Further research should also be conducted on the impact of family engagement on patient outcomes such as quality of life and health outcomes.


Sources



Acknowledgements

Project Lead More Information: James Squires, BA, MD, MS

Other Project Lead: Emily Perito, BA, MD, MS

Organization More Information: UPMC Children's Hospital of Pittsburgh

Project Budget: $249,271


The authors would like to thank PCORI for funding this project, as well as all participants who generously shared their time and experience with us. We also thank our research team at UPMC Children's Hospital of Pittsburgh for their commitment and dedication to this project.


The PARTNER project, funded by PCORI, focuses on the role of family engagement in pediatric transplant care, using the RealTime Clinic platform for data collection and analysis. The study analyzes how family engagement impacts patient-centered outcomes and satisfaction with care, highlighting the importance of patient-centered research and family engagement in improving healthcare outcomes, especially in special populations. The study's findings can inform future interventions aimed at improving family engagement in pediatric transplant care.


The Starzl Network for Excellence in Pediatric Transplantation (SNEPT) is a US network of pediatric transplant centers that improve transplant outcomes for children. It was established in 2016 by the University of Pittsburgh Medical Center Children's Hospital. The PARTNER project uses the infrastructure and partnerships of SNEPT to expand into organizational partnerships for patient-centered outcomes research (PCOR) and comparative effectiveness research (CER) on pediatric transplant care.


RealTime Clinic is a mobile platform developed with the PARTNER project to facilitate real-time data collection and analysis on family engagement in pediatric transplant care. The platform enables patients, families, and healthcare providers to share their experiences in real-time and provides a variety of data collection tools, such as surveys, interviews, and discussion forums. RealTime Clinic helps PARTNER to obtain unique insights into the experiences of patients, families, and healthcare providers in pediatric transplant care, which would not have been possible without the platform.

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