THE EVOLUTION OF CHRONIC DISEASE TREATMENT DECISIONS IN PEDIATRICS

Purpose: Little is known about how families’ treatment decisions evolve over time.  The purpose of this prospective, longitudinal study was to develop an understanding of how decisions occur regarding potentially high-risk treatments for pediatric chronic conditions.

Methods: We recruited families of children with arthritis or inflammatory bowel disease who were expected to discuss changing treatments at their next clinic visit.  After obtaining consent from healthcare providers, parents and patients, clinic visits were video-recorded.  Parents and adolescent patients then participated in individual telephone interviews 2 and 6 weeks after the visit.  Interviews were conducted using a semi-structured guide to understand the decision-making experience.  Data were coded by two people and analyzed using a combination of a framework approach and sequential, time-ordered matrices.  This approach facilitated analysis of individuals’ decision-making trajectories, as well as comparisons within and between families.

Results: 21 families, including 29 parents and 9 adolescents, participated in video-recording and interviews.  Nearly all participants experienced decision making as an iterative process, though the time period varied from weeks to years.  We found three dominant patterns to the decision evolution: (1) slow, steady progression over time; (2) step-wise progression through treatment options; or (3) abrupt decision making related to an acute clinical event.  With all 3 patterns, after making a decision, individuals immediately turned to the next decision related to the chronic condition.

Regardless of which pattern emerged, all parents and patients experienced both external and internal influences on their decision process.  External influences included events such as medical testing and discussions about treatment options.  Internal influences included emotions, treatment concerns and treatment expectations.  Regardless of whether they were external or internal, such influences were rarely discussed, nor asked about by providers, during the index visit.

Conclusion: Decision making in chronic conditions is an iterative process that occurs in three distinct patterns.  Understanding the internal and external influences on this process is an essential step in sharing treatment decisions with families of children with chronic conditions and requires providers to ask directly about such influences. Flexible interventions that can be adapted for different decision-making patterns and influences are needed to facilitate shared decision making in pediatric chronic conditions.