Clinical Implementation of Cleft-Q, a Patient Reported Outcome Instrument, in our Multidisciplinary Cleft Care Workflow
Liana Cheung, Anna R. Carlson, Jordan W. Swanson
Division of Plastic and Reconstructive Surgery, Children's Hospital of Philadelphia, Philadelphia, PA
Background Historically, treatment outcomes of cleft lip/palate patients have largely reflected surgeons’ assessment of patient appearance, well-being, and function. Increasingly, there is recognition that pediatric patients, their parents, and the surgeons and other practitioners caring for them perceive things differently. Patient-reported outcome (PRO) instruments, quantifying subjective outcomes in patients, are particularly appropriate for Cleft patients for whom stigmatization, communication challenges, eating and breathing difficulties, among others, can be difficult to assess objectively. Methodology Cleft lip/palate patients, seen in our weekly Cleft Multidisciplinary Clinic, were the target cohort in this project, with the validated, condition-specific Cleft-Q identified and licensed for use as the complement PRO instrument. An Attending Plastic Surgeon clinically championed the PRO implementation, facilitating discussion, feedback, and buy-in across the multidisciplinary team. Concurrently, collaboration with the local PRO team began building a seamless electronic integration of this PRO into the hospital’s electronic medical record. Results Clinical feasibility testing was conducted with paper and REDCap versions across two clinics involving 8 patients, 2 Plastic Surgeons, 1 Cleft Nurse Navigator, 2 Orthodontists, 5 Nurse Practitioners, 1 Psychologist, 1 Social Worker, and 2 Speech Pathologists. English-speaking patients eight years or older and their families were first approached by our Cleft Nurse Navigator who recruited participation in this feasibility test. Paper Cleft-Qs and electronic REDCap links were emailed and mailed out to patients two weeks prior to their clinic appointment. Patients were given the chance to complete the questionnaire at home and again upon arrival to clinic. Results were manually tabulated to produce a Clinical Dashboard for real-time multidisciplinary provider review displaying the patient’s color-coded outcomes compared to published normative data. Providers were encouraged to review outcomes prior to clinical encounters and “close the loop” in discussing results with each patient. Discussion Clinical implementation of Cleft-Q has been well received by patients and providers alike. Patients are empowered to fully communicate the scope of their health and psychological wellbeing before and after interventions and are actively involved in shared clinical decision making. Real-time data visualization of patient-reported outcomes allow clinicians to maximize utility of their clinical encounter and track individual and cohort trends over time, directing clinical treatment modifications and refining early identification for institutional quality improvement. This project exemplifies our model of patient-centered care, involving patient and clinician in tracking aesthetic, functional and psychosocial impacts of interventions that will lead to improved quality of life and patient satisfaction.
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