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150 Uncertainty communication in caregivers of children with neuromuscular scoliosis: a qualitative study
  1. Jody L Lin1,
  2. Angela Zhu1,
  3. Sabrina Sedano2,
  4. Tsivya Devereaux3,
  5. Alyssa Thorman4,
  6. Kimberly A Kaphingst5,6,
  7. Paul KJ Han7,
  8. Unni Narayanan8,
  9. Tamara Simon9,
  10. Gregory Stoddard10,
  11. Kaleb G Eppich11,
  12. Heather T Keenan1,
  13. Steven M Asch12,13,
  14. Angela Fagerlin14,15
  1. 1Pediatrics, University of Utah, Salt Lake City, USA
  2. 2Research on Children, Youth, and Families, Children’s Hospital Los Angeles, Los Angeles, USA
  3. 3School of Medicine, University of Utah, Salt Lake City, USA
  4. 4Orthopedics, University of Pennsylvania, Philadelphia, USA
  5. 5Communication, University of Utah, Salt Lake City, USA
  6. 6Huntsman Cancer Institute, University of Utah, Salt Lake City, USA
  7. 7Division of Cancer Control and Population Sciences, National Cancer Institute, Bethesda, USA
  8. 8Orthopaedic Surgery, Rehabilitation Sciences, Institute of Health Policy Management and Evaluation, University of Toronto, Hospital for Sick Children, Toronto, Canada
  9. 9Pediatrics, University of Southern California, Los Angeles, USA
  10. 10Study Design and Biostatistics Center, University of Utah, Salt Lake City, USA
  11. 11Internal Medicine, University of Utah, Salt Lake City, USA
  12. 12Medicine, Stanford University, Palo Alto, USA
  13. 13Palo Alto VA Health Care System, Palo Alto, USA
  14. 14Population Health Sciences, University of Utah, Salt Lake City, USA
  15. 15Salt Lake City VA Informatics Decision-Enhancement and Analytic Sciences, Salt Lake City, USA


Introduction Surgical treatment is the only definitive treatment to halt the progression of neuromuscular scoliosis (NMS) but is associated with complication rates of 17–40%. Caregivers experience considerable uncertainty during decision-making. This study aims to identify topics for which uncertainty is a concern to caregivers and how caregivers interpret that uncertainty.

Methods From two quaternary children’s hospitals, we recruited English- and Spanish-speaking adult caregivers of children aged 8–21 years with NMS who had previously decided whether to treat their child’s NMS with surgery. Caregivers completed an audio-recorded 45–60 minute semi-structured interview about uncertainty related to NMS treatment decisions. Two independent coders used thematic analysis of interview transcripts to inductively generate themes and serial coding reviews to generate agreement. Team meetings synthesized final themes. Subsequently, themes were categorized into an existing taxonomy of sources of uncertainty: probability, ambiguity, and complexity.1

Results From n=45 interviews, we identified six topical areas of uncertainty: right time for surgery, rate of NMS progression, benefits and risks of surgery, risks of non-surgical management, and effects of underlying comorbidities (see table 1 for quotes). The effects of comorbidities was the most commonly mentioned uncertainty, and the only uncertainty for which caregivers served as the information source rather than providers. Except for treatment risks and benefits, caregivers interpreted most uncertainty as arising from ambiguity or complexity.

Discussion Clinical encounters should better address how underlying comorbidities affect the risks and benefits of NMS treatment options.

Conclusion Successful strategies to communicate uncertainties from ambiguity and complexity are needed to address this issue.

Abstract 150 Table 1

Sample quotes organized by topical theme and source of uncertainty


  1. Han PJK, Klein WMP, Arora NK. Med Decis Making. 2011;311(6):828–838.

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