Clinical decision support research at CPCE focuses on improving and standardizing the shared decision-making (SDM) process in pediatric medicine, for both primary and inpatient care. SDM involves the integration of families’ preferences and goals with clinicians’ understanding of the medical evidence to make healthcare decisions.

Our prior clinical decision support work has improved vaccination rates among children receiving primary care from CHOP, increased timely referrals to early intervention services for children with developmental delay, improved co-morbidity screening among overweight children, and increased adherence to preventive health guidelines for premature infants.

Shared Decision-making in Pediatric Primary Care Settings

Shared Decision-making for Pediatric Patients with Chronic Illnesses

Shared Decision-making for Critically Ill Pediatric Patients

Electronic Health Record Clinical Decision Support

Decision-making in Pediatric Advanced Care

Clinical Decision Support Published Research

Shared Decision-making in Primary Care Pediatrics

This multi-year research project at CPCE has focused on understanding shared decision-making in pediatrics (especially in primary care) and developing strategies to foster the process. The research aims to first advance our understanding of the preferences and goals of families for using SDM, as well as the comfort and self-efficacy of clinicians to engage families in SDM. Ultimately, we want to improve the delivery of primary care for common interactions in primary care settings, such as immunization delivery, care of asthma, and ADHD. This work is driven by the finding that mutual support to families and clinicians improves outcomes relative to either one alone.

CPCE researchers have utilized numerous methods -- including qualitative approaches, observational studies, and randomized clinical trials -- to develop a robust body of research on clinical decision support.  The fields of clinical informatics and human computer interaction also inform this work.

Initial research findings demonstrated starkly different understandings of shared decision-making between clinicians and families, demonstrating the need for specific clinician training. CPCE researchers also developed multiple decision support systems to foster shared decision-making that have shown improved outcomes.

We are now working to foster the effective implementation of health IT systems to support families, clinicians and other stakeholders in medical decision-making across different conditions.

Read more about the ADHD Preferences and Goals Instrument, which was developed to help parents share their preferences and goals for treating their child’s ADHD with their doctor.

Read more about MyAsthma, an electronic medical record patient portal developed through this research that facilitates parents’ management of their child’s asthma and the communication of their concerns to the child’s care team. There are promising results from a study that looked at its feasibility, acceptability and impact.

What’s Next:

• Shared Decision-Making in ADHD
• Educating and Supporting Primary Care Providers in the Implementation of Evidence-based Practices for ADHD
• Grow2Gether: A Virtual Peer Group Intervention to Prevent Obesity Beginning in Infancy
• Informing Policy to Implement Pediatric Family Engagement in Meaningful Use of EHR Technology

Read a blog article about Shared Decision-making in ADHD.

See the Published Research

Funding: National Institutes of Health, Agency for Healthcare Research and Quality, Federal Maternal and Child Health Bureau, Oscar Mayer Family Foundation, Academic Pediatric Association, Pfizer

Please contact Alexander Fiks, MD, MSCE, CPCE associate director, associate medical director of the Pediatric Research Consortium, and an Urban Care pediatrician at CHOP, for more information about this line of research.

Shared Decision-making for Pediatric Patients with Chronic Illnesses

Because they don’t want to undermine parental autonomy, physicians often struggle with how to best support parental decision-making, particularly when their patients are near the end-of-life.

Initial research from CPCE explored the ethical obligations of providers in decision support and described two different approaches to supporting parents making decisions for seriously ill children. We found that an individualistic understanding of autonomy, which assumes that making a decision about medical care is something that individuals rationally do on their own, may lead clinicians to provide information for parents but neglect other elements like emotional support in decision-making. It also discourages making recommendations to avoid overly influencing decision-making.

A preferred “relational autonomy” approach recognizes that emotions and relationships influence decision-making. This approach expects clinicians to both provide informational and emotional support to families and to offer recommendations when families are open to them.

Our understanding of autonomy will change how we think about supporting parents in making decisions for their seriously ill children and the responsibilities of clinicians in supporting parents.

A next step in this line of research was to determine if the process of shared decision-making (SDM) could provide a mechanism for clinicians to deliver this support to parents of chronically ill children.

A latent class analysis of parents of children with a complex chronic condition or persistent asthma revealed two patterns of preference for SDM: one group preferred the information aspects of SDM, while the other preferred the relational aspects of SDM. Both groups of parents desired some degree of SDM with their child’s providers.

What’s Next: We are working to develop and validate a tool to measure parents’ preferences and capacities for SDM and then to determine the impact of the tool on their child’s asthma condition.

Read more about the Parental Shared Decision-Making preferences (PSDM) instrument, designed to assess parents’ preferences for various aspects of SDM with their child’s provider.

See the Published Research

Funding: CPCE, Leonard Davis Institute at University of Pennsylvania

Please contact Jennifer Walter, MD, PhD, MS, attending physician and faculty member, Dept. of Medical Ethics at CHOP, for more information about this line of research.

Shared Decision-making for Critically Ill Pediatric Patients

This randomized controlled trial looks at how having continuity of intensive care attending physicians for longer-stay patients admitted to the pediatric intensive care unit (PICU) impacts both patient outcomes and family satisfaction with clinical decision support.

Patients admitted to the PICU have a different attending physician caring for them every week. For those patients who have longer stays, this turnover in providers may impact their parents’ ability to make decisions for them during this already difficult time. Parents often describe the communication breakdown that occurs from having new providers caring for their child every week. We hypothesize that assigning “continuity care intensivists” to patients admitted to the PICU for longer than one week may impact patient and family outcomes.

We are measuring patient-level outcomes like length of stay in the hospital for patients in the intervention group compared to the usual care group. We are also measuring the impact of a continuity care intensivist on family satisfaction with decision-making and communication with their ICU attendings.

We are currently enrolling patients in a randomized controlled trial to evaluate differences in the group of patients who have been given the intervention versus patients who are receiving usual care.

Read more about this area of research.

Funding: Department of Anesthesia and Critical Care, CHOP

Please contact Jennifer Walter, MD, PhD, MS, attending physician and faculty member, Dept. of Medical Ethics at CHOP, for more information about this line of research.

Electronic Health Record Clinical Decision Support

CPCE faculty work in close collaboration with experts from CHOP’s Department of Biomedical and Health Informatics (DBHi) to develop and evaluate clinical decision support systems that enable clinicians to make smarter, safer decisions when caring for children. This includes efforts to improve medication safety and reduce the burden of alarm fatigue. Researchers are also actively working on studies to improve vital sign clinical decision support, as well as clinical decision support for clinical deterioration and sepsis.

See the Published Research

Funding: Pennsylvania Health Research Formula Fund Award, The Children’s Hospital of Philadelphia

Please contact Christopher P. Bonafide, MD, MSCE, attending physician in the Division of General Pediatrics and Assistant Professor of Pediatrics at the University of Pennsylvania, for more information about this research.

Decision-making in Pediatric Advanced Care

Parents making medical decisions for a child living with a life-threatening condition confront (sometimes repeatedly) an extremely daunting task, one almost beyond imagination: how to decide when to set aside the therapeutic goal of cure or of life prolongation and instead prioritize the goals of comfort or quality of life.

Through observational methods, we are studying a cohort of parents whose children are confronting life-threatening illnesses in intensive care, palliative care, and complex care settings. We aim to quantify the association between baseline measurements of:

• parental hopeful patterns of thinking

• positive and negative affect

• thoughts regarding the child's health trajectory

• degree of social support

• concordance within parental dyads regarding the major problems and hopes for their child

• judgments regarding potential attributes of "being a good parent" for their child and the subsequent decisions made regarding the care of the children and potential reprioritization of therapeutic goals over time.

The resulting improved understanding of parental decision-making can subsequently be used to enhance the quality of palliative care decision-making, with future development and testing of an evidence-based intervention for clinical decision-making support for parents.

Over the past several years, our research team has developed an integrative psychosocial conceptual model that we employ to aid parents in palliative care decision-making. Components of this model include:

• evaluating goals and potential re-goaling
• assimilating cognitive information
• managing emotional input and influences
• working collaboratively between parents and health care providers.

See the Published Research

Funding: National Institute of Nursing Research

Please contact Chris Feudtner, MD, PhD, MPH, Attending Physician and Director of Research, Pediatric Advanced Care Team, for more information about this line of research.

Clinical Decision Support Published Research

Shared Decision-making in Pediatric Primary Care Settings

Fiks AG, Grundmeier RW, Biggs LM, Localio AR, Alessandrini EA. Impact of Clinical Alerts Within an Electronic Health Record on Routine Childhood Immunization in an Urban Pediatric Population. Pediatrics, 2007. 120: 707-714.

Fiks AG, Hunter KF, Localio AR, Grundmeier RW, Bryant-Stephens T, Luberti AA, Bell LM, Alessandrini EA. Impact of Electronic Health Record-Based Primary Care Clinical Alerts on Influenza Vaccination for Children and Adolescents with Asthma: A Cluster Randomized Trial. Pediatrics, 2009. 124: 159-169.

Bell LM, Grundmeier RW, Localio R, Zorc J, Fiks AG, Zhang X, Bryant-Stephens T,  Swietlik M, Guevara JP. Electronic Health Record Based Decision Support to Improve Outpatient Asthma Care: A Cluster Randomized Trial. Pediatrics, 2010. 125: e770-777.

Mayne S, Karavite D, Grundmeier RW, Localio R, Feemster K, DeBartolo E, Hughes CC, Fiks AG. The Implementation and Acceptability of an HPV Vaccination Decision Support System Directed at Both Clinicians and Families. AMIA Annual Symposium Proceedings, 2012. Page: 616-624.

Fiks AG, Grundmeier RW, Mayne S, Song L, Feemster K, Karavite D, Hughes CC, Massey J, Keren R, Bell LM, Wasserman R, Localio AR. Effectiveness of Decision Support for Families, Clinicians, or Both on HPV Vaccine Receipt. Pediatrics, 2013. 131: 1114-24.

Fiks AG, Mayne S, Karavite DJ, DeBartolo E, Grundmeier RW. A Shared e-Decision Support Portal for Pediatric Asthma. Journal of Ambulatory Care Management, April-June 2014. 37: 120-6.

Fiks AG, Mayne S, Karavite D, Suh A, O'Hara R, Localio R, Ross M, Grundmeier RW. Parent-Reported Outcomes of a Shared Decision Making Portal in Asthma: A Practice-based RCT. Pediatrics, 2015. 135: e965-73.

Fiks AG, Zhang P, Localio AR, Khan S, Grundmeier RW, Karavite DJ, Bailey C, Alessandrini EA, Forrest, CB. Adoption of Electronic Medical Record-Based Decision Support for Otitis Media in Children. Health Services Research, April 2015. 50(2): 489-513.

Shared Decision-making for Pediatric Patients with Chronic Illnesses/ Critically ill pediatric patients

Walter JK, Ross LF. Relational Autonomy: Moving beyond the limits of isolated individualism.  Pediatrics, 2014. 133: S16.

Walter, JK. Supporting her Autonomy: The Obligations of Guardians and Physicians in Adolescent Refusals of Care. Journal of Clinical Ethics, 2012. 23(1):56-59.

Shared Decision-making, General

Fiks AG, Localio AR, Alessandrini EA, Asch DA, Guevara JP. Shared Decision Making in Pediatrics: A National Perspective. Pediatrics, 2010. 126: 306-314.

Fiks AG, Gafen A, Hughes CC, Hunter KF, Barg FK. Using Freelisting to Understand Shared Decision Making in ADHD: Parents' and Pediatricians' Perspectives. Patient Education and Counseling, 2011. 84: 236-244.

Fiks AG, Hughes CC, Gafen A, Guevara JP, Barg FK: Contrasting Parents' and Pediatricians' Perspectives on Shared Decision Making in ADHD. Pediatrics, 2011. 127: e188-196.

Fiks AG, Mayne S, Hughes C, DeBartolo E, Behrens C, Guevara J, Power T. Development of an Instrument to Assess Families' Preferences and Goals for ADHD Treatment.  Academic Pediatrics, 2012. 12: 445-455.

Fiks AG, Mayne S, DeBartolo E, Power TJ, Guevara JP. Parental Preferences and Goals Regarding ADHD Treatment. Pediatrics, 2013. 132: 692-702.

Electronic Health Record Clinical Decision Support

Bonafide CP, Brady PW, Keren R, Conway PH, Marsolo K, Daymont C. Development of heart and respiratory rate percentile curves for hospitalized children. Pediatrics, 2013. 131(4): e1150-7.

Gálvez JA, Ahumada L, Simpao AF,Lin EE, Bonafide CP,Choudhry D, England WR, Jawad AF, Friedman D, Sesok-Pizzini DA, Rehman MA. Visual analytical tool for evaluation of 10-year perioperative transfusion practice at a children's hospital. Journal of the American Medical Informatics Association, 2014. 21(3): 529-34.

Simpao AF, Ahumada LM, Desai BR, Bonafide CP, Gálvez JA, Rehman MA, Jawad AF, Shelov ED. Optimization of drug–drug interaction alert rules in a pediatric hospital's electronic health record system using a visual analytics dashboard. Journal of the American Medical Informatics Association, October, 2014. Page: 361-369.

Daymont C, Bonafide CP, Brady PW. Heart rates in hospitalized children by age and body temperature. Pediatrics, April 2015. 135(5):e1173-81.

Decision-making in Pediatric Advanced Care

Hexem KR, Mollen CJ, Carroll K, Lanctot DA, Feudtner C. How parents of children receiving pediatric palliative care use religion, spirituality, or life philosophy in tough times. J Palliat Med, 2011. 14(1):39-44.

Renjilian CB, Womer JW, Carroll KW, Kang TI, Feudtner C. Parental explicit heuristics in decision-making for children with life-threatening illnesses. Pediatrics, 2013. 131(2):e566-72.

Hexem KR, Miller VA, Carroll KW, Faerber JA, Feudtner C. Putting on a happy face: emotional expression in parents of children with serious illness. J Pain Symptom Manage, 2013. 45(3):542-51.

Feudtner C, Walter JK, Faerber JA, Hill DL, Carroll KW, et al. Good-parent beliefs of parents of seriously ill children. JAMA Pediatr, 2015. 169(1):39-47.

Feudtner C, Carroll KW, Hexem KR, Silberman J, Kang TI, et al. Parental hopeful patterns of thinking, emotions, and pediatric palliative care decision making: a prospective cohort study. Arch Pediatr Adolesc Med, 2010. 164(9):831-9.

Hill DL, Miller V, Walter JK, Carroll KW, Morrison WE, Munson DA, Kang TI, Hinds PS, Feudtner C. Regoaling: a conceptual model of how parents of children with serious illness change medical care goals. BMC Palliat Care, 2014. 13(1):9.