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Shared Decision Making

Shared Decision-making And Parent-reported Outcomes In Pediatric Sleep-disordered Breathing

  • PI:                        Emily Boss, MD, MPH, FACS, co-investigator Mary Catherine Beach, MD, MPH
  • Funding:            Agency for Healthcare Research and Quality; Johns Hopkins Clinician Scientist Award; American Society of Pediatric Otolaryngology Career Development Award 
  • Status:                 Ongoing

Although adenotonsillectomy is the most common surgical procedure used to treat sleep-disordered breathing (SDB), for many children the scientific evidence concretely supporting long-term benefits of surgery compared to watchful waiting is limited. Moreover, there is broad concern for unwarranted variation and potential overuse of this common surgical procedure. Shared decision-making, a patient-centered approach emphasizing physician-patient partnership and evidence disclosure, may facilitate treatment decisions and improve quality of care for families of children with SDB.

In this study we evaluate decision-making and quality-of-care outcomes in parents considering elective surgical care with adenotonsillectomy for children with SDB. We engage stakeholders, inclusive of families, providers, policy-makers, and public health researchers, to inform the specific content and format of our ultimate study question and outcome measures. Using qualitative and quantitative methods, we evaluate the effects of physician communication and shared decision-making approaches on parent experience of care and outcomes, treatment decisions, and adherence to treatment recommendations.  We also investigate the effects of child and family demographic and social characteristics on experiences and decisions made in SDB surgical care, and uptake and acceptance of shared decision-making. 

Related Publications:

Boss EF, Ishman SL, Smith DF. (2011)  Racial/ethnic and socioeconomic disparities in the evaluation and treatment of sleep-disordered breathing in children.  Int J Pediatr Otorhinolaryngol ;75(3):299-307.

Boss EF, Marsteller J, Simon AE. (2012)  Outpatient Tonsillectomy in Children: Sociodemographic and Geographic Variation in the United States, 2006.  J Pediatr,  May;160(5):814-9. Epub 2011 Dec 17.  PMID: 22183449

Boss EF.  (2012) Tonsillectomy variation in the U.S.: The evidence is catching up, but are the payers aware of the evidence?  J Pediatr,  Sep 10. doi: 10.1016/j.jpeds 2012.07.065. 

Boss EF, Benke JR, Tunkel DE, Ishman SL, Bridges JF, Kim JM. (2014) Public Insurance and Timing of Polysomnography and Surgical Care for Children with Sleep-Disordered Breathing. JAMA Otolaryngol Head Neck Surg, Dec 11. doi: 10.1001/jamaoto.2014.3085. PMID: 25503255

Boss EF, Nagarajan N. (2014) Prevalence and overview of shared decision-making for surgical care:  A systematic review.  PROSPERO 2014:CRD42014013053 Available from