Role of patient and family engagement in quality improvement for pediatric surgery
Seminars in Pediatric Surgery. 2023 Apr;32(2):151281.
doi: 10.1016/j.sempedsurg.2023.151281
Salva N Balbale 1, Maria Cho 2, Mehul V Raval 3, Sharron M Close 4
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Division of Gastroenterology and Hepatology, Department of Medicine; Department of Medical Social Sciences; Northwestern Quality Improvement, Research, & Education in Surgery (NQUIRES), Department of Surgery; & Center for Health Services and Outcomes Research, Institute of Public Health and Medicine (IPHAM), Northwestern University Feinberg School of Medicine, Chicago, IL; Center of Innovation for Complex Chronic Healthcare, Health Services Research & Development, Edward Hines, Jr. VA Hospital, Hines, IL. Electronic address: Salva.Balbale@northwestern.edu.
Inside Out Medicine, Seattle, WA.
Division of Pediatric Surgery, Department of Surgery, Ann & Robert H. Lurie Children's Hospital of Chicago, Northwestern University Feinberg School of Medicine, Chicago, IL.
Department of Pediatric Advanced Practice Nursing, Nell Hodgson Woodruff School of Nursing, Emory University, Atlanta, GA.
ABSTRACT
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In recent decades, the role of quality improvement (QI) in pediatric surgery has grown substantially. Patient and family engagement can help to maximize the impact of QI by enhancing safety and patient outcomes. Yet, broader, systematic efforts to actively involve patients and families in QI initiatives remain a persistent gap in pediatric surgery. To address this gap, we propose an agenda centered on three key goals for future quality improvement efforts: (1) building partnerships with patients and their families; (2) expanding the use of patient-reported outcomes (PROs) and novel, cross-disciplinary research methods; and (3) engaging patients and families consistently across all stages of pediatric surgical care. Fulfilling this agenda will be essential in shifting our mindset to view QI as a collective that involves patients, families, clinicians, and payers in continuous, system-wide opportunities to evaluate and improve care. Actively listening to and collaborating with patients and families may also help renew our focus on narrowing the gap between current practice and the best possible practice for children undergoing surgery.
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Actively engaging patients is a well-established strategy to improve healthcare quality and patient-centered care. It is tied to many benefits, including alignment of quality improvement (QI) efforts with patient-identified priorities and improved patient experiences, satisfaction, and outcomes. The benefits of patient engagement in QI are even more relevant when extended to clinical specialties such as pediatric surgery, where families and other caregivers experience much of the surgical care journey alongside children and where caregiver burden remains high. Carrying these valuable experiences, patients and families can uniquely contribute to QI initiatives by informing the scope and urgency of problems, along with potential solutions, along the care continuum. They can help care providers understand whether existing QI measures in pediatric surgery—including length of hospital stays, nil per os (NPO) status, surgical site infections (SSIs), and opioid and antibiotic stewardship—are consistent with patient and family needs and preferences. Growing evidence suggests that patient and family engagement can help reduce perioperative harm while enhancing pediatric patient outcomes and family satisfaction. Still, broader, more systematic efforts to actively involve patients and families in QI initiatives continue to be a persistent gap in pediatric surgery.
The reasons underlying this gap may reflect a larger historical foundation that, to date, has not fully supported patient and family engagement in QI. The science of QI focuses on how to narrow the gap between current practice and the best possible practice. Fifteen years ago, as part of the Institute for Healthcare Improvement's (IHI) Triple Aim, Berwick and colleagues proposed that narrowing this gap and delivering high-quality care requires improving patient care experiences and population health while reducing healthcare costs.16 Much like other quality frameworks, this was predicated on the principle that opportunities to improve processes exist on every occasion. It is important to note, however, that many of the cornerstones of healthcare QI were originally derived from the manufacturing industry, and adapting them around the complexities and unique stakeholders involved in healthcare delivery—including patients and families—remains challenging. It is also well-documented that the overarching design of the United States (US) healthcare system has, for decades, contributed to variation in care quality and failure to implement best practices. Today, despite the success of many individual QI programs in reducing costs while enhancing patient safety and satisfaction, QI has not been adopted as a cohesive strategy to transform care and rarely leverages patient and family perspectives.
A lack of patient and family engagement is undoubtedly a missed opportunity in pediatric surgery, where there is already an established need to address variation in surgical outcomes and care quality. In light of this, some have further articulated a need to (1) ensure that patients and families remain at the center of pediatric surgical care and, ultimately, to (2) transition toward care models that provide patients and families the voice and dignity to make decisions that are right for them while respecting clinicians’ expertise and responsibility to recommend best courses of action. The path to accomplishing this is unclear, however, partly because of the challenge of translating high-level policy aspirations into change in care and limited practical guidance to promote patient engagement in QI.
These elements underscore the need to build an agenda that guides future efforts to enhance QI initiatives in pediatric surgery by integrating patient and family voices. It warrants a broader discussion that brings together the views of pediatric surgeons and other clinical experts, QI researchers, and patients and families. As a starting point, we aim to describe existing approaches used in patient- and family-engaged pediatric surgery QI projects and highlight potential strategies that may be applicable from QI work beyond this setting. Additionally, we reflect on our ongoing experiences examining enhanced recovery protocols (ERPs) for children undergoing gastrointestinal (GI) surgeries (hereafter referred to as the ENRICH-US study; R01HD099344) across 18 pediatric hospitals in the US. Our agenda centers on three key goals for future quality efforts: (1) building partnerships with patients and their families; (2) expanding the use of patient-reported outcomes (PROs) and novel, cross-disciplinary research methods; and (3) engaging patients and families consistently across all stages of pediatric surgical care.
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Build partnerships with patients and their families using a family-centered care approach
There is growing evidence describing patients and caregivers as partners in healthcare QI. Current evidence, however, is focused on specific disease conditions such as cancer, arthritis, and depression, without significant mention of patient partnerships with surgical teams. A possible barrier to including patient partners in surgical QI is a lack of patient and staff capability to create and sustain successful partnerships. Cox et al. developed a capability framework as a guide forExpand the use of PROs and novel, cross-disciplinary research methods
Patient-reported outcomes (PROs) evaluate physical, mental, and social health from the perspectives of adults and children. The Patient-Reported Outcome Measure Information System (PROMIS) is an National Institutes of Health-funded initiative used to develop and validate instruments to measure health outcomes. These instruments are widely used to assess pain, fatigue, physical functioning, emotional distress, and social participation. Many of these measures have been adapted for specificEngage patients and families consistently across all stages of surgical care
Mounting evidence suggests that the timing and frequency of patient engagement is increasingly important to consider to effectively improve health outcomes and increase quality of care. In 2018, Heiss and Raval described how patient engagement in pediatric surgery is critical through all phases of care. They describe in detail, how counseling must extend beyond explanation of surgical risk and benefit to include bidirectional expectations of daily patient goals, optimal nutrition,... -
One strategy to improve patient and family engagement is to redesign pediatric surgery toward a pediatric perioperative surgical medical home that centers on patients and families and is associated with lower LOS and other benefits. Adapted from previously developed family-centered medical homes for children, pediatric surgical medical homes represent a coordinated approach to pediatric surgery, promoting standardization in perioperative systems to improve clinical outcomes
